importance of literature review in healthcare

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The Literature Review: A Foundation for High-Quality Medical Education Research

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Despite a surge in published scholarship in medical education 1 and rapid growth in journals that publish educational research, manuscript acceptance rates continue to fall. 2 Failure to conduct a thorough, accurate, and up-to-date literature review identifying an important problem and placing the study in context is consistently identified as one of the top reasons for rejection. 3 , 4 The purpose of this editorial is to provide a road map and practical recommendations for planning a literature review. By understanding the goals of a literature review and following a few basic processes, authors can enhance both the quality of their educational research and the likelihood of publication in the Journal of Graduate Medical Education ( JGME ) and in other journals.

The Literature Review Defined

In medical education, no organization has articulated a formal definition of a literature review for a research paper; thus, a literature review can take a number of forms. Depending on the type of article, target journal, and specific topic, these forms will vary in methodology, rigor, and depth. Several organizations have published guidelines for conducting an intensive literature search intended for formal systematic reviews, both broadly (eg, PRISMA) 5 and within medical education, 6 and there are excellent commentaries to guide authors of systematic reviews. 7 , 8

• A literature review forms the basis for high-quality medical education research and helps maximize relevance, originality, generalizability, and impact.
• A literature review provides context, informs methodology, maximizes innovation, avoids duplicative research, and ensures that professional standards are met.
• Literature reviews take time, are iterative, and should continue throughout the research process.
• Researchers should maximize the use of human resources (librarians, colleagues), search tools (databases/search engines), and existing literature (related articles).
• Keeping organized is critical.

Such work is outside the scope of this article, which focuses on literature reviews to inform reports of original medical education research. We define such a literature review as a synthetic review and summary of what is known and unknown regarding the topic of a scholarly body of work, including the current work's place within the existing knowledge . While this type of literature review may not require the intensive search processes mandated by systematic reviews, it merits a thoughtful and rigorous approach.

Purpose and Importance of the Literature Review

An understanding of the current literature is critical for all phases of a research study. Lingard 9 recently invoked the “journal-as-conversation” metaphor as a way of understanding how one's research fits into the larger medical education conversation. As she described it: “Imagine yourself joining a conversation at a social event. After you hang about eavesdropping to get the drift of what's being said (the conversational equivalent of the literature review), you join the conversation with a contribution that signals your shared interest in the topic, your knowledge of what's already been said, and your intention.” 9

The literature review helps any researcher “join the conversation” by providing context, informing methodology, identifying innovation, minimizing duplicative research, and ensuring that professional standards are met. Understanding the current literature also promotes scholarship, as proposed by Boyer, 10 by contributing to 5 of the 6 standards by which scholarly work should be evaluated. 11 Specifically, the review helps the researcher (1) articulate clear goals, (2) show evidence of adequate preparation, (3) select appropriate methods, (4) communicate relevant results, and (5) engage in reflective critique.

Failure to conduct a high-quality literature review is associated with several problems identified in the medical education literature, including studies that are repetitive, not grounded in theory, methodologically weak, and fail to expand knowledge beyond a single setting. 12 Indeed, medical education scholars complain that many studies repeat work already published and contribute little new knowledge—a likely cause of which is failure to conduct a proper literature review. 3 , 4

Likewise, studies that lack theoretical grounding or a conceptual framework make study design and interpretation difficult. 13 When theory is used in medical education studies, it is often invoked at a superficial level. As Norman 14 noted, when theory is used appropriately, it helps articulate variables that might be linked together and why, and it allows the researcher to make hypotheses and define a study's context and scope. Ultimately, a proper literature review is a first critical step toward identifying relevant conceptual frameworks.

Another problem is that many medical education studies are methodologically weak. 12 Good research requires trained investigators who can articulate relevant research questions, operationally define variables of interest, and choose the best method for specific research questions. Conducting a proper literature review helps both novice and experienced researchers select rigorous research methodologies.

Finally, many studies in medical education are “one-offs,” that is, single studies undertaken because the opportunity presented itself locally. Such studies frequently are not oriented toward progressive knowledge building and generalization to other settings. A firm grasp of the literature can encourage a programmatic approach to research.

Approaching the Literature Review

Considering these issues, journals have a responsibility to demand from authors a thoughtful synthesis of their study's position within the field, and it is the authors' responsibility to provide such a synthesis, based on a literature review. The aforementioned purposes of the literature review mandate that the review occurs throughout all phases of a study, from conception and design, to implementation and analysis, to manuscript preparation and submission.

Planning the literature review requires understanding of journal requirements, which vary greatly by journal ( table 1 ). Authors are advised to take note of common problems with reporting results of the literature review. Table 2 lists the most common problems that we have encountered as authors, reviewers, and editors.

Sample of Journals' Author Instructions for Literature Reviews Conducted as Part of Original Research Article a

Common Problem Areas for Reporting Literature Reviews in the Context of Scholarly Articles

Locating and Organizing the Literature

Three resources may facilitate identifying relevant literature: human resources, search tools, and related literature. As the process requires time, it is important to begin searching for literature early in the process (ie, the study design phase). Identifying and understanding relevant studies will increase the likelihood of designing a relevant, adaptable, generalizable, and novel study that is based on educational or learning theory and can maximize impact.

Human Resources

A medical librarian can help translate research interests into an effective search strategy, familiarize researchers with available information resources, provide information on organizing information, and introduce strategies for keeping current with emerging research. Often, librarians are also aware of research across their institutions and may be able to connect researchers with similar interests. Reaching out to colleagues for suggestions may help researchers quickly locate resources that would not otherwise be on their radar.

During this process, researchers will likely identify other researchers writing on aspects of their topic. Researchers should consider searching for the publications of these relevant researchers (see table 3 for search strategies). Additionally, institutional websites may include curriculum vitae of such relevant faculty with access to their entire publication record, including difficult to locate publications, such as book chapters, dissertations, and technical reports.

Strategies for Finding Related Researcher Publications in Databases and Search Engines

Search Tools and Related Literature

Researchers will locate the majority of needed information using databases and search engines. Excellent resources are available to guide researchers in the mechanics of literature searches. 15 , 16

Because medical education research draws on a variety of disciplines, researchers should include search tools with coverage beyond medicine (eg, psychology, nursing, education, and anthropology) and that cover several publication types, such as reports, standards, conference abstracts, and book chapters (see the box for several information resources). Many search tools include options for viewing citations of selected articles. Examining cited references provides additional articles for review and a sense of the influence of the selected article on its field.

Box Information Resources

• Web of Science a
• Education Resource Information Center (ERIC)
• Cumulative Index of Nursing & Allied Health (CINAHL) a
• Google Scholar

Once relevant articles are located, it is useful to mine those articles for additional citations. One strategy is to examine references of key articles, especially review articles, for relevant citations.

Getting Organized

As the aforementioned resources will likely provide a tremendous amount of information, organization is crucial. Researchers should determine which details are most important to their study (eg, participants, setting, methods, and outcomes) and generate a strategy for keeping those details organized and accessible. Increasingly, researchers utilize digital tools, such as Evernote, to capture such information, which enables accessibility across digital workspaces and search capabilities. Use of citation managers can also be helpful as they store citations and, in some cases, can generate bibliographies ( table 4 ).

Citation Managers

Knowing When to Say When

Researchers often ask how to know when they have located enough citations. Unfortunately, there is no magic or ideal number of citations to collect. One strategy for checking coverage of the literature is to inspect references of relevant articles. As researchers review references they will start noticing a repetition of the same articles with few new articles appearing. This can indicate that the researcher has covered the literature base on a particular topic.

Putting It All Together

In preparing to write a research paper, it is important to consider which citations to include and how they will inform the introduction and discussion sections. The “Instructions to Authors” for the targeted journal will often provide guidance on structuring the literature review (or introduction) and the number of total citations permitted for each article category. Reviewing articles of similar type published in the targeted journal can also provide guidance regarding structure and average lengths of the introduction and discussion sections.

When selecting references for the introduction consider those that illustrate core background theoretical and methodological concepts, as well as recent relevant studies. The introduction should be brief and present references not as a laundry list or narrative of available literature, but rather as a synthesized summary to provide context for the current study and to identify the gap in the literature that the study intends to fill. For the discussion, citations should be thoughtfully selected to compare and contrast the present study's findings with the current literature and to indicate how the present study moves the field forward.

To facilitate writing a literature review, journals are increasingly providing helpful features to guide authors. For example, the resources available through JGME include several articles on writing. 17 The journal Perspectives on Medical Education recently launched “The Writer's Craft,” which is intended to help medical educators improve their writing. Additionally, many institutions have writing centers that provide web-based materials on writing a literature review, and some even have writing coaches.

The literature review is a vital part of medical education research and should occur throughout the research process to help researchers design a strong study and effectively communicate study results and importance. To achieve these goals, researchers are advised to plan and execute the literature review carefully. The guidance in this editorial provides considerations and recommendations that may improve the quality of literature reviews.

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Choosing a Review Type

For guidance related to choosing a review type, see:

• "What Type of Review is Right for You?" - Decision Tree (PDF) This decision tree, from Cornell University Library, highlights key difference between narrative, systematic, umbrella, scoping and rapid reviews.
• Reviewing the literature: choosing a review design Noble, H., & Smith, J. (2018). Reviewing the literature: Choosing a review design. Evidence Based Nursing, 21(2), 39–41. https://doi.org/10.1136/eb-2018-102895
• What synthesis methodology should I use? A review and analysis of approaches to research synthesis Schick-Makaroff, K., MacDonald, M., Plummer, M., Burgess, J., & Neander, W. (2016). What synthesis methodology should I use? A review and analysis of approaches to research synthesis. AIMS Public Health, 3 (1), 172-215. doi:10.3934/publichealth.2016.1.172 More information less... ABSTRACT: Our purpose is to present a comprehensive overview and assessment of the main approaches to research synthesis. We use "research synthesis" as a broad overarching term to describe various approaches to combining, integrating, and synthesizing research findings.
• Right Review - Decision Support Tool Not sure of the most suitable review method? Answer a few questions and be guided to suitable knowledge synthesis methods. Updated in 2022 and featured in the Journal of Clinical Epidemiology 10.1016/j.jclinepi.2022.03.004

Types of Evidence Synthesis / Literature Reviews

Literature reviews are are comprehensive summaries and syntheses of the previous research on a given topic.  While narrative reviews are common across all academic disciplines, reviews that focus on appraising and synthesizing research evidence are increasingly important in the health and social sciences.  

Most evidence synthesis methods use formal and explicit methods to identify, select and combine results from multiple studies, making evidence synthesis a form of meta-research.  

The review purpose, methods used and the results produced vary among different kinds of literature reviews; some of the common types of literature review are detailed below.

Common Types of Literature Reviews 1

Narrative (literature) review.

• A broad term referring to reviews with a wide scope and non-standardized methodology
• Search strategies, comprehensiveness of literature search, time range covered and method of synthesis will vary and do not follow an established protocol

Integrative Review

• A type of literature review based on a systematic, structured literature search
• Often has a broadly defined purpose or review question
• Seeks to generate or refine and theory or hypothesis and/or develop a holistic understanding of a topic of interest
• Relies on diverse sources of data (e.g. empirical, theoretical or methodological literature; qualitative or quantitative studies)

Systematic Review

• Systematically and transparently collects and categorize existing evidence on a question of scientific, policy or management importance
• Follows a research protocol that is established a priori
• Some sub-types of systematic reviews include: SRs of intervention effectiveness, diagnosis, prognosis, etiology, qualitative evidence, economic evidence, and more.
• Time-intensive and often takes months to a year or more to complete 
• The most commonly referred to type of evidence synthesis; sometimes confused as a blanket term for other types of reviews

Meta-Analysis

• Statistical technique for combining the findings from disparate quantitative studies
• Uses statistical methods to objectively evaluate, synthesize, and summarize results
• Often conducted as part of a systematic review

Scoping Review

• Systematically and transparently collects and categorizes existing evidence on a broad question of scientific, policy or management importance
• Seeks to identify research gaps, identify key concepts and characteristics of the literature and/or examine how research is conducted on a topic of interest
• Useful when the complexity or heterogeneity of the body of literature does not lend itself to a precise systematic review
• Useful if authors do not have a single, precise review question
• May critically evaluate existing evidence, but does not attempt to synthesize the results in the way a systematic review would 
• May take longer than a systematic review

Rapid Review

• Applies a systematic review methodology within a time-constrained setting
• Employs methodological "shortcuts" (e.g., limiting search terms and the scope of the literature search), at the risk of introducing bias
• Useful for addressing issues requiring quick decisions, such as developing policy recommendations

Umbrella Review

• Reviews other systematic reviews on a topic
• Often defines a broader question than is typical of a traditional systematic review
• Most useful when there are competing interventions to consider

1. Adapted from:

Eldermire, E. (2021, November 15). A guide to evidence synthesis: Types of evidence synthesis. Cornell University LibGuides. https://guides.library.cornell.edu/evidence-synthesis/types

Nolfi, D. (2021, October 6). Integrative Review: Systematic vs. Scoping vs. Integrative. Duquesne University LibGuides. https://guides.library.duq.edu/c.php?g=1055475&p=7725920

Delaney, L. (2021, November 24). Systematic reviews: Other review types. UniSA LibGuides. https://guides.library.unisa.edu.au/SystematicReviews/OtherReviewTypes

Further Reading: Exploring Different Types of Literature Reviews

• A typology of reviews: An analysis of 14 review types and associated methodologies Grant, M. J., & Booth, A. (2009). A typology of reviews: An analysis of 14 review types and associated methodologies. Health Information and Libraries Journal, 26 (2), 91-108. doi:10.1111/j.1471-1842.2009.00848.x More information less... ABSTRACT: The expansion of evidence-based practice across sectors has lead to an increasing variety of review types. However, the diversity of terminology used means that the full potential of these review types may be lost amongst a confusion of indistinct and misapplied terms. The objective of this study is to provide descriptive insight into the most common types of reviews, with illustrative examples from health and health information domains.
• Clarifying differences between review designs and methods Gough, D., Thomas, J., & Oliver, S. (2012). Clarifying differences between review designs and methods. Systematic Reviews, 1 , 28. doi:10.1186/2046-4053-1-28 More information less... ABSTRACT: This paper argues that the current proliferation of types of systematic reviews creates challenges for the terminology for describing such reviews....It is therefore proposed that the most useful strategy for the field is to develop terminology for the main dimensions of variation.
• Are we talking the same paradigm? Considering methodological choices in health education systematic review Gordon, M. (2016). Are we talking the same paradigm? Considering methodological choices in health education systematic review. Medical Teacher, 38 (7), 746-750. doi:10.3109/0142159X.2016.1147536 More information less... ABSTRACT: Key items discussed are the positivist synthesis methods meta-analysis and content analysis to address questions in the form of "whether and what" education is effective. These can be juxtaposed with the constructivist aligned thematic analysis and meta-ethnography to address questions in the form of "why." The concept of the realist review is also considered. It is proposed that authors of such work should describe their research alignment and the link between question, alignment and evidence synthesis method selected.
• Meeting the review family: Exploring review types and associated information retrieval requirements Sutton, A., Clowes, M., Preston, L., & Booth, A. (2019). Meeting the review family: Exploring review types and associated information retrieval requirements. Health Information & Libraries Journal, 36(3), 202–222. doi: 10.1111/hir.12276

Integrative Reviews

"The integrative review method is an approach that allows for the inclusion of diverse methodologies (i.e. experimental and non-experimental research)." (Whittemore & Knafl, 2005, p. 547).

• The integrative review: Updated methodology Whittemore, R., & Knafl, K. (2005). The integrative review: Updated methodology. Journal of Advanced Nursing, 52 (5), 546–553. doi:10.1111/j.1365-2648.2005.03621.x More information less... ABSTRACT: The aim of this paper is to distinguish the integrative review method from other review methods and to propose methodological strategies specific to the integrative review method to enhance the rigour of the process....An integrative review is a specific review method that summarizes past empirical or theoretical literature to provide a more comprehensive understanding of a particular phenomenon or healthcare problem....Well-done integrative reviews present the state of the science, contribute to theory development, and have direct applicability to practice and policy.

• Conducting integrative reviews: A guide for novice nursing researchers Dhollande, S., Taylor, A., Meyer, S., & Scott, M. (2021). Conducting integrative reviews: A guide for novice nursing researchers. Journal of Research in Nursing, 26(5), 427–438. https://doi.org/10.1177/1744987121997907
• Rigour in integrative reviews Whittemore, R. (2007). Rigour in integrative reviews. In C. Webb & B. Roe (Eds.), Reviewing Research Evidence for Nursing Practice (pp. 149–156). John Wiley & Sons, Ltd. https://doi.org/10.1002/9780470692127.ch11

Scoping Reviews

Scoping reviews are evidence syntheses that are conducted systematically, but begin with a broader scope of question than traditional systematic reviews, allowing the research to 'map' the relevant literature on a given topic.

• Scoping studies: Towards a methodological framework Arksey, H., & O'Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8 (1), 19-32. doi:10.1080/1364557032000119616 More information less... ABSTRACT: We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems.
• Scoping studies: Advancing the methodology Levac, D., Colquhoun, H., & O'Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5 (1), 69. doi:10.1186/1748-5908-5-69 More information less... ABSTRACT: We build upon our experiences conducting three scoping studies using the Arksey and O'Malley methodology to propose recommendations that clarify and enhance each stage of the framework.
• Methodology for JBI scoping reviews Peters, M. D. J., Godfrey, C. M., McInerney, P., Baldini Soares, C., Khalil, H., & Parker, D. (2015). The Joanna Briggs Institute reviewers’ manual: Methodology for JBI scoping reviews [PDF]. Retrieved from The Joanna Briggs Institute website: http://joannabriggs.org/assets/docs/sumari/Reviewers-Manual_Methodology-for-JBI-Scoping-Reviews_2015_v2.pdf More information less... ABSTRACT: Unlike other reviews that address relatively precise questions, such as a systematic review of the effectiveness of a particular intervention based on a precise set of outcomes, scoping reviews can be used to map the key concepts underpinning a research area as well as to clarify working definitions, and/or the conceptual boundaries of a topic. A scoping review may focus on one of these aims or all of them as a set.

Systematic vs. Scoping Reviews: What's the Difference? 

YouTube Video 4 minutes, 45 seconds

Rapid Reviews

Rapid reviews are systematic reviews that are undertaken under a tighter timeframe than traditional systematic reviews. 

• Evidence summaries: The evolution of a rapid review approach Khangura, S., Konnyu, K., Cushman, R., Grimshaw, J., & Moher, D. (2012). Evidence summaries: The evolution of a rapid review approach. Systematic Reviews, 1 (1), 10. doi:10.1186/2046-4053-1-10 More information less... ABSTRACT: Rapid reviews have emerged as a streamlined approach to synthesizing evidence - typically for informing emergent decisions faced by decision makers in health care settings. Although there is growing use of rapid review "methods," and proliferation of rapid review products, there is a dearth of published literature on rapid review methodology. This paper outlines our experience with rapidly producing, publishing and disseminating evidence summaries in the context of our Knowledge to Action (KTA) research program.
• What is a rapid review? A methodological exploration of rapid reviews in Health Technology Assessments Harker, J., & Kleijnen, J. (2012). What is a rapid review? A methodological exploration of rapid reviews in Health Technology Assessments. International Journal of Evidence‐Based Healthcare, 10 (4), 397-410. doi:10.1111/j.1744-1609.2012.00290.x More information less... ABSTRACT: In recent years, there has been an emergence of "rapid reviews" within Health Technology Assessments; however, there is no known published guidance or agreed methodology within recognised systematic review or Health Technology Assessment guidelines. In order to answer the research question "What is a rapid review and is methodology consistent in rapid reviews of Health Technology Assessments?", a study was undertaken in a sample of rapid review Health Technology Assessments from the Health Technology Assessment database within the Cochrane Library and other specialised Health Technology Assessment databases to investigate similarities and/or differences in rapid review methodology utilised.
• Rapid Review Guidebook Dobbins, M. (2017). Rapid review guidebook. Hamilton, ON: National Collaborating Centre for Methods and Tools.
• NCCMT Summary and Tool for Dobbins' Rapid Review Guidebook National Collaborating Centre for Methods and Tools. (2017). Rapid review guidebook. Hamilton, ON: McMaster University. Retrieved from http://www.nccmt.ca/knowledge-repositories/search/308
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Keeping pace with the healthcare transformation: a literature review and research agenda for a new decade of health information systems research

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• Published: 17 July 2021
• Volume 31 , pages 901–921, ( 2021 )

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• Nadine Ostern   ORCID: orcid.org/0000-0003-3867-3385 1 ,
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A Correction to this article was published on 20 December 2021

This article has been updated

Accelerated by the coronavirus disease 2019 (Covid-19) pandemic, major and lasting changes are occuring in healthcare structures, impacting people's experiences and value creation in all aspects of their lives. Information systems (IS) research can support analysing and anticipating resulting effects.

The purpose of this study is to examine in what areas health information systems (HIS) researchers can assess changes in healthcare structures and, thus, be prepared to shape future developments.

A hermeneutic framework is applied to conduct a literature review and to identify the contributions that IS research makes in analysing and advancing the healthcare industry.

We draw an complexity theory by borrowing the concept of 'zooming-in and out', which provides us with a overview of the current, broad body of research in the HIS field. As a result of analysing almost 500 papers, we discovered various shortcomings of current HIS research.

Contribution

We derive future pathways and develop a research agenda that realigns IS research with the transformation of the healthcare industry already under way.

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Avoid common mistakes on your manuscript.

Introduction

Particularly since the last decade, IT has opened up new opportunities for ‘ehealth’ through telemedicine and remote patient monitoring, alongside potential improvements in the cost-effectiveness and accessibility of health care (Chiasson & Davidson, 2004 ). Accordingly, health information systems (HIS) research has come to focus on how healthcare organizations invest in and then assimilate HIS, looking in particular at the impact of digitalization on healthcare costs, healthcare quality, and patient privacy (Chen et al., 2019 ; Park, 2016 ).

Less attention has been paid to issues such as mobile health, health information interchange, digital health communities, and services that change customer expectations and may lead to major disruptions (Chen et al., 2019 ; Park, 2016 ). These topics, however, are becoming increasingly important due to the penetration of the user and health market by external players, especially tech companies, providing services such as fitness trackers, and surveillance software for patient monitoring in hospitals (Gantori et al., 2020 ). Modern IT, thus, becomes a catalyst to provide greater operational efficiency, offering new possibilities for tech companies to build new health-centred business models and services (Park, 2016 ).

The ways in which tech companies are entering the healthcare industry can be seen amid the spread of coronavirus disease 2019 (Covid-19), which is pushing healthcare systems to the edge of their capacities (Worldbank, 2020 ). In this extraordinary condition, the pandemic has provided an additional opportunity for tech companies that were hitherto not active or not allowed to enter the healthcare industry (Gantori et al., 2020 ).

We are currently seeing how entering the healthcare market is actually taking place, particularly in the USA, where tech companies are increasingly offering services to help address some of the problems associated with Covid-19. Google’s subsidiary Verily, for instance, facilitates the automation of coronavirus symptom screening and provides actionable, up-to-date information that supports community-based decision-making (Landi, 2020 ). Although the collaboration with Verily assists the US government in tracking cases to identify the spread of the virus, it is reasonable to suggest that Verily probably did not launch the screening tool out of altruism. In fact, to receive preliminary screening results via the Verily app, citizens have to log into their personal Google account (Greenwood, 2020 ). This allows Verily to gain immense value by aggregating huge, structured data sets and analyse them to come up with new health services, such as better tools for disease detection, new data infrastructures, and insurance offerings that – for better or for worse – may outplay current healthcare providers and even disrupt whole healthcare ecosystems (CB Insights, 2018 ). Similarly, Amazon has started to provide cloud space through Amazon Web Services to store health surveillance data for the Australian government’s tracing app (Tillett, 2020 ), and Amazon Care, a division initially responsible for handling internal staff care needs, now cooperates with the Bill and Melinda Gates Foundation to distribute Covid-19 testing kits to US residents (Lee & Nilsson, 2020 ).

Looking at information systems (IS) researchers’ previous assessments of state-of-the-art healthcare-related IS literature reveals that most scholars seem to have little or no concern for the beginning of those potentially long-lasting changes that are occurring in the healthcare industry (Chen et al., 2019 ). This is worrying, considering that it is already apparent that the years ahead will be marked by economic volatility and social upheaval as well as direct and indirect health consequences, including sweeping transformations in many of the world’s healthcare systems.

While it is clear that recent developments and the push of tech and platform companies into the healthcare sector can significantly improve the quality of life for billions of people around the world, it will be accompanied by serious challenges for healthcare industries, governments, and individuals (Park, 2016 ). Technological advances are, for instance, giving rise to a plethora of smart, connected products and services, combining sensors, software, data, analytics, and connectivity in all kinds of ways, which in turns leads to a restructuring of health industry boundaries and the empowerment of novel actors, especially tech and platform companies such as IBM, Google, and Amazon (Park, 2016 ).

Observing those changes, we need to develop a general understanding of long-term trends such as digitalization and blurring industry boundaries. As the pandemic is only an amplifier of longer-lasting trends, it is likely that the consequences and exogenous effects on the healthcare industry will go far beyond the time of the current pandemic. Given these observations, we wonder whether the IS research domain is ready to capture, understand, and accompany these developments, which require a holistic view of the healthcare industry, its structures, and the interdependencies between incumbents and new entrants. Thus, we argue that it is now time to develop a more comprehensive understanding of these developments and to determine the role that IS research can play by asking: How can we prepare HIS research to capture and anticipate current developments in the healthcare industry?

To find answers to this question, our paper provides a literature overview of HIS research by ‘zooming in and zooming out’ (Gaskin et al., 2014 ) and by drawing on complexity theory (Benbya et al., 2020 ). Since a healthcare system, like the industry as a whole, can be understood as a complex, digital socio-technical system (Kernick & Mitchell, 2009 ; Therrien et al., 2017 ), zooming in and zooming out is a way to view, capture, and theorize the causes, dynamics, and consequences of a system’s complexity. Complex systems are characterized by adaptiveness, openness (Cilliers, 2001 ), and the diversity of actors and their mutual dependency in the system, meaning that outcomes and research span various levels within these systems, although the boundaries of socio-technical systems are elusive. Assuming that HIS research is just as complex as the socio-technical system investigated, we first zoom in, focusing on concrete research outcomes across levels (i.e., what we can actually observe). Zooming in is followed by zooming out, which means abstracting from the concrete level and embracing the strengths and disparities of overall HIS research on a higher level in which concrete research outcomes are embedded (Benbya et al., 2020 ). Using this approach, we can capture and understand the complexity of HIS research without losing sight of concrete research issues and topics that drive research in this field.

To do this, we chose a hermeneutic framework to guide us in a thorough review and interpretation of HIS literature and lead us to the following overarching observations: (i) The literature review determines the unique contribution that IS research plays in analysing and advancing the healthcare industry. However, it also shows that we are hardly prepared to take up current developments and anticipate their consequences. (ii) The reason for this unpreparedness is that we currently neglect the ecosystem perspective and thus ignore holistic approaches to resolve the striking number of interrelated issues in HIS research. (iii) Based on the unique insights of this literature review, our paper provides a research agenda in which we use complexity theory to discuss the consequences of current developments. This theory assists IS researchers not only to better understand developments and implications thereof for the healthcare industry (and thus HIS research) but also to create a meaningful impact on the future of this industry. Since we have limited our research explicitly to the IS domain, our results may not be generally applicable to other healthcare research domains and we do not claim to provide an overview of the literature in the field of HIS research. However, while IS researchers cannot solve the pandemic directly, preparing them by providing a new research agenda will support them in developing concepts and applications, thereby helping them to overcome the negative effects of the pandemic. In our opinion, it is particularly important that IS research, and especially HIS-related research, obtains a deeper understanding of the needed transformation that is caused by digitalization and the emergence of new players catalysed by the current pandemic.

The remainder of this paper is structured as follows. The next section is concerned with the hermeneutic framework used to conduct the systematic literature review. After explaining the hermeneutic approach and the research steps, we elaborate on the key findings by zooming in; that is, we focus on the key results that emerge from analysing and interpreting the literature for each of the phases defined in the course of the literature sorting process. We then concentrate on zooming out, emphasizing the patterns and interdependencies across phases, which helps us determine the state of HIS research. The results of both parts of the literature review – i.e., zooming in and zooming out (Benbya et al., 2020 ; Gaskin et al., 2014 ) – support us in identifying strengths, as well as drawbacks, in HIS research. On this basis, we develop a research agenda that provides future directions for how HIS research can evolve to anticipate the impending transformation of the healthcare industry.

Literature review: a hermeneutic approach

To answer our research question, we conducted a literature review based on hermeneutic understanding. In particular, we followed Boell and Cecez-Kecmanovic ( 2014 ). They proposed a hermeneutic philosophy as a theoretical foundation and methodological approach that focuses on the inherently interpretive processes in which a reader engages in an ever-expanding and deepening understanding of a relevant body of literature. Adopting a comprehensive literature review approach that addresses well-known issues resulting from applying structured literature review approaches (e.g., Webster & Watson, 2002 ), we strive toward the dual purpose of hermeneutic analysis – i.e., to synthesize and critically assess the body of knowledge (Boell & Cecez-Kecmanovic, 2014 ). We would like to emphasize that the hermeneutic approach to literature reviews is not in opposition to structured approaches. Rather, it addresses the weaknesses of structured approaches (i.e., that they view engagement with the literature as a routine task rather than as a process of intellectual development) and complements them with the hermeneutic perspective to create a holistic approach for conducting literature reviews.

Theoretical underpinning and research method

A methodological means for engaging in reciprocal interpretation of a whole and its constituent elements is the hermeneutic cycle (Bleicher, 2017 ), which consists of a mutually intertwined search and acquisition circle (Circle 1 in Fig.  1 ) and the wider analysis and interpretation circle (Circle 2 in Fig.  1 ) (Boell & Cecez-Kecmanovic, 2014 ). Figure  1 depicts the steps associated with the hermeneutic literature review. The search and acquisition circle is shown on the left of the figure, while the analysis and interpretation circle containing steps of meta and content analysis is depicted on the right. The two circles should be understood as an iterative procedure, the nature of which will be explained in the following. 

Hermeneutic procedure applied to the literature review

Circle 1: Search and acquisition

The hermeneutic literature review starts with the search and acquisition circle, which is aimed at finding, acquiring, and sorting relevant publications. In line with holistic thinking, we began with the identification of a rather small set of highly relevant literature (Boell & Cecez-Kecmanovic, 2014 ) and went on to identify further literature on the basis of progressively emerging keywords. This step is central to the hermeneutic approach and addresses a criticism on structured literature reviews, namely that they downplay the importance of reading and dialogical interaction between the literature and the reader in the literature search process, reducing it to a formalistic search, stifling academic curiosity, and threatening quality and critique in scholarship and research (Boell & Cecez-Kecmanovic, 2014 ; MacLure, 2005 ). Thus, while the search process remains formalized, as in pure structured approaches, the hermeneutic approach allows us to acquire more information about the problem at hand and to identify more relevant sources of information (Boell & Cecez-Kecmanovic, 2014 ).

Given our initial research question and the scope of the review, we began by searching for papers in the Association for Information System’s (AIS’s) eLibrary over a period of 30 years (1990 to 2019). We consider this database to be a source of the most significant publications in the field of HIS research with a focus on the IS research domain. Using the keywords ‘digital health’ and ‘digital healthcare service’, we identified an initial set of 54 papers based on the title, abstract, and keyword search. Engaging in a first round of the hermeneutic search and acquisition circle, we extended and refined these keywords by identifying emerging topics within the literature, as well as using backward and forward search (Webster & Watson, 2002 ). In particular, with each additional paper identified through backward and forward search, we compared keyword references in the papers to our list of keywords and added them if there was sufficient content delimitation. The decision to add a keyword was discussed with all authors until consensus was reached. This led us to a set of 12 keywords, including ‘electronic health’, ‘ehealth’, ‘mobile health’, ‘mhealth’, ‘health apps’, ‘tech health’, ‘healthcare services’, ‘healthcare informatics’, ‘medical informatics’, and ‘health data’.

The selection of publications being considered for our research comprised all journals belonging to the AIS eLibrary, the Senior Scholars’ Basket of Eight Journals (e.g., European Journal of Information Systems, Information Systems Research , and MIS Quarterly ), well-regarded journals following the analyses of Chiasson and Davidson ( 2004 ) and Chen et al. ( 2019 ) (e.g., Business & Information Systems Engineering , Communications of the ACM, and Decision Support Systems ), and the proceedings of the major AIS conferences (e.g., Americas Conference on Information Systems (AMCIS), International Conference on Information Systems (ICIS)). An overview of the selected journals and proceedings is provided in Appendix 1 .

Using our set of keywords, we searched for each keyword individually in the AIS eLibrary and the databases of the respective journals. Subsequently, we created a dataset and filtered out the duplicates, yielding a total number of 1,789 papers to be screened in the search and acquisition circle (Circle 1 in Fig.  1 ). Figure  2 provides an overview of this process by listing the total number of articles identified for each journal individually.

Steps of the search process to create the data set

The resulting 1,789 papers progressively passed through the intertwined hermeneutic circles. Because of the large number, we divided the papers at random into four equally sized groups and assigned them to each of the authors. Each author then screened the paper in his or her group. In the course of several rounds of discussion, decisions on the inclusion of keywords and articles in the literature review were made by all authors, based on the original recommendations of the author responsible for the respective group. To ensure rigor and transparency of the analysis and results, we kept a logbook in which all decisions of the authors and steps of the literature review were recorded (Humphrey, 2011 ).

Given the abundance of topics that were already apparent from titles and abstracts, we began to sort the publications (Boell & Cecez-Kecmanovic, 2014 ). The process of sorting proved to be challenging, as HIS research is diverse and tends to be eclectic (Agarwal et al., 2010 ). This is why researchers have developed frameworks for clustering and analysing HIS research (LeRouge et al., 2007 ). So far, however, no consent on a unified framework has emerged, and sorting is often strongly influenced by the authors’ views on HIS research (Agarwal et al., 2010 ; Fichman et al., 2011 ). For instance, Agarwal et al. ( 2010 ) predetermined health IT adoption and health IT impact as major themes associated with health ITs, acknowledging that this pre-categorization of research topics made a systematic review of the growing and increasingly complex HIS literature unfeasible. Consequently, we decided to sort the articles we had identified into groups inspired by and loosely related to the phases of design science research (DSR) (Peffers et al., 2008 ), which is an essential step in hermeneutics – i.e., defining guidelines to facilitate interpretive explication (Cole & Avison, 2007 ). DSR can be understood as a cumulative endeavour and, therefore, we understood HIS research as accumulative knowledge that can be reconstructed and consolidated using DSR phases as guidance (vom Brocke et al., 2015 ; vom Brocke et al., 2009 ). In particular, this helped us to sort the articles without prejudice to expected HIS research topics and clusters (Grondin, 2016 ).

In the past, researchers have used the DSR process in the context of literature reviews to identify advances in design science-related research outcomes (Offermann et al., 2010 ). In this paper, we use the DSR phases – in the sense of a rough guideline – as a neutral lens to classify articles according to their research outcomes. We thereby assume that HIS literature can be seen as an overall process, where research results and progress are built upon each other and can be classified into phases of problem identification and research issues , definition of research objectives and possible solution space , design and development of solutions , demonstration of research effectiveness, innovativeness and acceptance , and evaluation . These phases served as a guide to achieve an outcome-oriented, first-hand sorting of articles, while this approach also gave us the opportunity to take a bird's-eye view on HIS research. Note that we intentionally omitted the last step of DSR – i.e., communication – as we regard communication as present in all published articles. Based on our initial reading, we assigned all 1,789 papers to the phases and discussed this sorting in multiple rounds until all authors agreed on the assignments.

Simultaneously, we applied criteria for the inclusion and exclusion of articles. We included full papers published in the journals and conference proceedings belonging to our selection. We excluded articles that were abstract-only papers, research-in-progress papers, panel formats, or workshop formats, as well as papers without direct thematic reference to our research objective. Additionally, during the acquisition stage we stored selected papers in a separate database whenever they fulfilled certain quality criteria (e.g., for separate studies using the same dataset, such as a conference publication and a subsequent journal publication, we only used the articles with the most comprehensive reporting of data to avoid over-representation).

The authors read the resulting 489 papers to identify new core terms and keywords that were used in subsequent searches, which not only provided the link to the analysis and interpretation circle but also informed the literature search. For this purpose, each author read the papers and kept notes in the logbook that supported us in systematically recording the review process and allowed us to shift from concentrating on particular papers to focusing on scientific concepts (Boell & Cecez-Kecmanovic, 2014 ; Webster & Watson, 2002 ).

Circle 2: Analysis and interpretation

The search and acquisition circle formed part of the iterative procedure of analysis and interpretation, whereby the reading of individual papers was the key activity linking Circle 1 to the steps of Circle 2 (Boell & Cecez-Kecmanovic, 2014 ). Through orientational reading we gained a general understanding of the literature, thus laying the foundation for the subsequent steps of analysis and interpretation (Boell & Cecez-Kecmanovic, 2014 ).

Within the analysis and interpretation circle, two types of reviews were conducted for all identified and sorted articles: in a first round a meta-review, and in a second round a content analysis of the papers was performed. Meta-reviews are a useful tool for capturing and analysing massive quantities of knowledge using systematic measures and metrics. We followed Palvia et al. ( 2015 ), who proposed a structured method that is integrated into the hermeneutic approach. In particular, having identified and sorted the relevant research articles, we applied proposed review features, including methodological approach, level of observation, sample size, and research focus (Humphrey, 2011 ; Palvia et al., 2015 ) to map, classify, and analyse the publications (Boell & Cecez-Kecmanovic, 2014 ). In doing so, we slightly adapted the classic meta-analysis by focusing on meta-synthesis, which is similar to meta-analysis but follows an interpretive rather than a deductive approach. Whereas a classic meta-analysis tries to increase certainty in cause-and-effect conclusions, meta-synthesis seeks to understand and explain the phenomena of mainly qualitative work (Walsh & Downe, 2005 ). The results of the meta-synthesis provided the basis for our subsequent critical assessment of content. Furthermore, we created a classification matrix based on particularly salient features of the meta-review (i.e., levels of observation and research foci), which facilitated and standardized the content analysis.

Within the matrix, the levels of observation comprised infrastructure (e.g., information exchange systems, electronic health records), individuals (patients and users of digital health services), professionals (e.g., nurses and general practitioners), organizations (hospitals and other medical institutions), and an ecosystem level. The latter is defined as individuals, professionals, organizations, and other stakeholders integrated via a digital infrastructure and aiming to create a digital environment for networked services and organizations with common resources and expectations (Leon et al., 2016 ). To identify the most important concepts used by researchers, we discussed a variety of approaches to the derivation of research foci – i.e., areas containing related or similar concepts that are frequently used in research on HIS. Finally, six research focus areas emerged, covering all relevant research areas. To describe the core HIS research issues addressed by these foci, we used the following questions:

HIS strategy: What are the prerequisites for configuring, implementing, using, maintaining, and finding value in HISs?

HIS creation: How are HISs composed or developed?

HIS implementation: How are HISs implemented and integrated?

HIS use and maintenance: How can HISs be used and maintained once in place?

Consequences and value of HIS: What are the consequences and the added value of HISs?

HIS theorization: What is the intellectual contribution of HIS research?

We used the classification matrix as a tool for assigning publications and finding patterns across research articles and phases. In particular, we used open, axial, and selective coding (Corbin & Strauss, 1990 ) to analyse the content of articles in a second round of the analysis and interpretation circle. Each author individually assigned open codes to text passages while reading the identified research articles, noting their thoughts in the shared digital logbook that was used for constant comparative analysis. Once all authors had agreed on the open codes, axial coding – which is the process of relating the categories and subcategories (including their properties) to each other (Wolfswinkel et al., 2013 ) – was conducted by each author and then discussed until consent on codes was reached. Next, we conducted selective coding and discussed the codes until theoretical saturation was achieved (Corbin & Strauss, 1990 ; Matavire & Brown, 2008 ). For the sake of consistent terminology, we borrowed terms from Chen et al. ( 2019 ), who used multimethod data analysis to investigate the intellectual structure of HIS research. In particular, they proposed 22 major research themes, which we assigned to the initial codes whenever possible. In two rounds of discussion in which we compared the assignment of codes, two additional codes emerged, which left us with a total of 24 theme labels (Appendix 2 ). By discussing the codes at all stages of coding, theoretical saturation emerged, which is the stage at which no additional data are being found or properties of selective codes can be developed (Glaser & Straus, 1968 ; Saunders et al., 2018 ). In fact, independent from each other, all authors saw similar instances occurring over and over again, resulting in the same codes, making us confident that we had reached theoretical saturation (Saunders et al., 2018 ).

Finally, we entered the codes into the classification matrix, which allowed us to identify patterns based on the meta and content analysis. This enabled us to provide insights into the strengths and weaknesses of current HIS research; these are presented in the following section.

Zooming-in: key findings of the phase-based literature analysis

In the following, we ‘zoom in’ (Gaskin et al., 2014 ) by presenting key findings of the literature review for each phase, illustrated by means of the classification matrices. We assigned selective codes that emerged from the content analysis to the fields of the matrices, with the numbers in brackets indicating the frequency with which codes emerged. Note that, for the sake of clarity, we displayed only the most relevant research themes in the matrices and indicated the number of further papers using the reference ‘other themes.’ A complete list of research themes for each phase can be found in the appendix (Appendix 2 ). In the following, each table shows the classification matrix and selective codes that resulted from the meta and content analysis of papers in the respective phase. The shaded areas in the matrix show focused research themes (i.e., selective codes) and characteristics of research articles that gave way to clusters (i.e., collections of themes that appear frequently and/or characteristically for the respective focus).

Phase 1: Problem identification and research issues

Within the first phase, a large body of literature was found (218 articles). This phase encompasses articles that identify problems and novel research issues as a main outcome, with the aim of pointing out shortcomings and provoking further research. For instance, besides behavioural issues such as missing user acceptances or trust in certain HISs, the design and effectiveness of national health programs and/or HIS is a frequently mentioned topic. It should be noted, however, that literature assigned to this phase is extremely diverse in terms of research foci, levels of observation, and research themes, and hardly any gaps can be identified (Table 1 ).

The first cluster (1a) encompasses the research focus of HIS strategy, spanning all levels of observation and totalling 24 publications. HIS strategy appears to be of particular relevance to the levels of organization and infrastructure. Content-wise, the theme of health information interchange is of particular interest, referring, for example, to the development of a common data infrastructure (Ure et al., 2009 ), consumer-oriented health websites (Fisher et al., 2007 ), and security risks of inter-organizational data sharing (Zhang & Pang, 2019 ). HIS productivity and HIS security are the second most salient themes, focusing, for example, on measuring the effectiveness of fitness apps (Babar et al., 2018 ) and presenting challenges with regard to the interoperability of medical devices (Sametinger et al., 2015 ).

The second cluster (1b), comprising 25 publications, represents the ecosystem level and focuses mainly on national and cross-national HIS-related issues such as the relation between ICT penetration and access to ehealth technologies across the European Union (Currie & Seddon, 2014 ), as well as on the collaboration and involvement of different stakeholders (Chang et al., 2009 ; King, 2009 ). Most important here is health information interchange – e.g., the provision, sharing, and transfer of information (Bhandari & Maheshwari, 2009 ; Blinn & Kühne, 2013 ).

Cluster 1c covers the research focus of HIS use and maintenance, as well as the consequences of HIS. Whereas most papers addressing the HIS acceptance theme focus on professionals’ or patients’ acceptance of specific technological solutions, such as telemedicine (Djamsbi et al., 2009 ) or electronic health records (Gabel et al., 2019 ), papers assigned to health information interchange focus on topics related to information disclosure, such as self-tracking applications (Gimpel et al., 2013 ). Finally, the HIS outsourcing and performance theme concentrates on financial aspects in organizations, including potential for quality improvements and cost reductions (Setia et al., 2011 ; Singh et al., 2011 ).

Finally, the fourth cluster (1d) focuses on HIS theorizing with respect to the individual and infrastructure levels of observation. Although this cluster represents a range of theme labels (15), those addressing HIS acceptance, HIS patient-centred care, as well as health analytics and data mining predominate. Papers within the theme label HIS acceptance cover a wide range of topics, such as the acceptance of telehealth (Tsai et al., 2019 ) up to the usage intentions of gamified systems (Hamari & Koivisto, 2015 ). The same applies to the papers assigned to the theme labels of health analytics and data mining. Focusing on the infrastructure level of observation, the identified papers mostly review academic research on data mining in healthcare in general (Werts & Adya, 2000 ), through to the review of articles on the usage of data mining with regard to diabetes self-management (Idrissi et al., 2019 ). Papers on HIS patient-centred care mostly address the challenges and opportunities of patient-centred ehealth applications (Sherer, 2014 ).

Apart from these clusters, quite a few research articles refer to the infrastructure level of observation, addressing information sharing in general (Li et al., 2008 ), electronic medical records (George & Kohnke, 2018 ; Wessel et al., 2017 ), and security and privacy issues (Zafar & Sneha, 2012 ).

Most common in terms of research methods within this phase are case studies (57), followed by quantitative data analyses (50), theoretical discussions (29), and literature studies (14). In particular, case studies dominate when referring to the ecosystem or infrastructure level of observation, whereas quantitative analyses are conducted when individuals or professionals are at the centre of the discussion. However, and unsurprisingly given the considerable diversity of research themes within this phase, the variety of research methods is also quite large, ranging from field studies (Paul & McDaniel, 2004 ), to interviews (Knight et al., 2008 ), to multimethod research designs (Motamarri et al., 2014 ).

Phase 2: Definition of research objectives and solution space

The second phase of HIS research yielded a lower number of articles (45) compared to the phase of problem identification and research issues. The second phase comprises articles that focus on proposing possible solutions to existing problems – i.e., introducing theory-driven, conceptual designs of health ecosystems including health information interchange, as well as scenario analyses anticipating the consequences of HIS implementation on an organizational level. Based on the research foci and levels of observation, we identified three specific thematic clusters, as shown in Table 2 .

The first cluster (2a) comprises the ecosystem level of observation and encompasses eight publications. Besides a strong tendency toward theory-driven research, health information interchange is the most common theme. We found that the need to enable cooperation within networks and to ensure accurate data input was addressed in most of the literature. While a majority of studies focus on the application of HIS in networks within specific boundaries, such as medical emergency coordination (Sujanto et al., 2008 ) or Singapore’s crisis management in the fight against the SARS outbreak in 2003 (Devadoss & Pan, 2004 ), other studies, such as that by Aanestad et al. ( 2019 ), take an overarching perspective, addressing the need to break down silo thinking and to start working in networks. Following the question of why action research fails to persist over time, Braa et al. ( 2004 ) highlighted the role of network alignment, criticizing action research projects for failing to move beyond the prototyping phase and, therefore, failing to have any real impact.

Cluster 2b, encompassing nine publications, was derived from the observation that studies within the organizational level concentrated strongly on HIS use and maintenance and the consequences of HIS research. Herein, a vast array of topics was observed, such as the potential for cost reduction through HIS (Byrd & Byrd, 2009 ), the impact of HIS on product and process innovation in European hospitals (Arvanitis & Loukis, 2014 ), and the perceived effectiveness of security risk management in healthcare (Zafar et al., 2012 ). Moreover, we found that practice-oriented methods, such as mixed-method approaches, surveys, data analyses, and case studies, are used predominantly within this cluster. Focusing on the latter, most studies analyse particular scenarios by using a rather small sample of cases, for instance, Al-Qirim ( 2003 ) analysed factors influencing telemedicine success in psychiatry and dermatology in Norway.

The third cluster (2c) was derived from analysis of the HIS creation research focus (nine publications). Although health information interchange is the most represented in this cluster, a large number of further themes can be observed. Studies within this cluster predominantly address design aspects of system interoperability, focusing on data processing and data interchange between the actors. HISs mostly serve as a tool for the development or enhancement of decision support systems, such as for real-time diagnostics combining knowledge management with specific patient information (Mitsa et al., 2007 ) or clinical learning models incorporating decision support systems in the dosing process of initial drug selection (Akcura & Ozdemir, 2008 ).

Phase 3: Design and development

The design and development phase comprises 84 research articles concerned with the creation of novel IS artefacts (e.g., theories, models, instantiations). We thereby refer to Lee et al.’s ( 2015 ) definition of the IS artefact – i.e., the information, technology, and social artefact that forms an IS artefact by interacting. We assigned to this phase papers that are explicitly concerned with developing solutions for information exchange (e.g., design of messaging systems or knowledge systems in hospitals), technological artefacts (e.g., hardware or software used for generating electronic health records), and social artefacts that relate to social objects (e.g., design of national or international institutions and policies to control specific health settings and patient-centred solutions). Within the design and development phase, the analysis revealed two clusters (Table 3 ).

The first cluster (3a) was identified in the research focus of HIS creation (31 articles). Here, the most frequent research theme is HIS innovation followed by HIS and patient-centred care, HIS productivity, and health analytics and data mining. The focus is on specific contexts, mostly medical conditions and artefacts developed for their treatment, such as in the context of mental health/psychotherapy (Neben et al., 2016 ; Patel et al., 2018 ), diabetes (Lichtenberg et al., 2019 ), or obesity (Pletikosa et al., 2014 ). Furthermore, information infrastructures or architectures – for instance, for the process of drug prescription (Rodon & Silva, 2015 ), or for communication between healthcare providers and patients (Volland et al., 2014 ) – are represented.

The second aggregation of research articles is found in cluster 3b, focusing on theoretical aspects of HIS (32 articles). Again, these studies span all levels of observation (including infrastructure, individual, professional, organization, and ecosystem). Topics in this theme are diverse, ranging from HIS on a national level (Preko et al., 2019 ), to knowledge management in healthcare (Wu & Hu, 2012 ) to security of HIS (Kenny & Connolly, 2016 ).

Beyond both clusters, it is evident that during design and development, researchers do not deal with the consequences of HIS, nor does HIS strategy play an important role. Furthermore, only in the research focus of theorization is the ecosystem level of some relevance to other levels (e.g., the individual level). It should be noted that ecosystems are mostly referred to in terms of nations or communities, without any transnational or global perspective. Furthermore, the term ‘ecosystem’ has not been used in research, and within the other research focus areas, the ecosystem level is barely represented. Moreover, articles combining different perspectives of the single levels of observation on HIS – namely individuals (i.e., patients), professionals (i.e., medical staff), and organizations (e.g., hospitals) – are rare. During design and development, potential users are not typically integrated, whereas it is quite common to derive requirements and an application design from theory, only involving users afterwards – e.g., in the form of a field experiment (e.g., Neben et al., 2016 ).

Surprisingly, theoretical papers outweigh papers on practical project work, whereby the latter mostly focus on a description of the infrastructure or artefact (e.g., Dehling & Sunyaev, 2012 ; Theobalt et al., 2013 ; Varshney, 2004 ) or are based on (mostly single) case studies (e.g., Hafermalz & Riemer, 2016 ; Klecun et al., 2019 ; Ryan et al., 2019 ). Within the design and development phase, the generation of frameworks, research models, or taxonomies is prevalent (e.g., Preko et al., 2019 ; Tokar et al., 2015 ; Yang & Varshney, 2016 ).

Phase 4: Demonstration

This phase includes 35 articles related to presenting and elaborating on proposed solutions – e.g., how HIS can be implemented organization-wide (e.g., via integration into existing hospital-wide information systems), proposed strategies and health policies, as well as novel solutions that focus on health treatment improvements. Within the demonstration phase, we identified two clusters that emerged from the meta and content analyses (Table 4 ).

Cluster 4a (10 articles) is characterized by articles that focus on HIS issues related to the infrastructure level, spanning the research foci of HIS strategy, creation, and deployment. Content-wise, the cluster deals mainly with technical feasibility and desirability of HISs, including topics such as the configuration of modular infrastructures that support a seamless exchange of HISs within and between hospitals (Dünnebeil et al., 2013 ). Moreover, papers in this cluster address HIS practicability by determining general criteria that are important for the design of health information systems (Maheshwari et al., 2006 ) or conduct HIS application tests by carrying out prototypical implementations of communication infrastructures. In particular, the latter are tested and proven to meet specific technical standards to guarantee the frictionless transmission of health information data (Schweiger et al., 2007 ). In contrast, Heine et al. ( 2003 ) upscaled existing HIS solutions and tested the infrastructure in large, realistic scenarios.

Conversely, cluster 4b (11 articles) is mainly concerned with HIS use and maintenance, spanning several levels of observation – i.e., infrastructure, individuals, professionals, and organizations. Interestingly, papers in this cluster aim at efficiency and added value when looking at the infrastructure and organizational levels, whereas researchers are more interested in acceptance when focusing on the individual and professional use of HISs. Overall, cluster 4b is primarily concerned with organizational performance (e.g., increases in efficiency due to better communication and seamless transfer of patient health information) as well as user acceptance of new HISs.

Although the two clusters constitute a diverse set of literature and themes, it is apparent that research taking an ecosystem perspective is very rarely represented. Across the papers, only three are concerned with issues related to the ecosystem level. In particular, Lebcir et al. ( 2008 ) applied computer simulations in a theoretical demonstration as a decision support system for policy and decision-makers in the healthcare ecosystem. Abouzahra and Tan ( 2014 ) used a mixed-methods approach to demonstrate a model that supports clinical health management. Findikoglu and Watson-Manheim ( 2016 ) addressed the consequences of the implementation of electronic health records (EHR) systems in developing countries.

Phase 5: Evaluation

The fifth phase includes 92 publications with a focus on assessing existing or newly introduced HIS artefacts – i.e., concepts, policies, applications, and programs – thereby proving their innovativeness, effectiveness, or user acceptance. As Table 5 shows, three clusters were identified.

The main focus of publications in the evaluation phase is on the infrastructure level, where most papers are related to HIS creation and HIS use and maintenance. Therefore, together with the publications pigeonholed to HIS deployment and consequences of HIS, these articles were summarized as the first cluster (5a, comprising 53 articles). The assessment of national HIS programs, as well as mobile health solutions, are a frequent focus (10 papers). Articles on HIS use and maintenance are largely related to the professional, organizational, and ecosystem levels and were thus grouped as cluster 5b (10 articles). A third cluster (5c – 11 articles) emerged from research articles in HIS theorization. Here, papers at all levels of observation were found. Research focusing on areas such as HIS strategy and consequences of HIS are, with a few exceptions, not covered in the evaluation phase. Methods used include interviews, focus groups, and observations (e.g., Romanow et al., 2018 ). Experiments and simulation are rarely applied (e.g., Mun & Lee, 2017 ). The number of interviews shows a huge spread, starting with 12 and reaching a maximum of 150 persons interviewed.

Under the evaluation lens, the ecosystem perspective is covered by seven articles, but only three papers look at cases, while the others focus on theorization or consequences in terms of costs. Overall, popular topics in the evaluation phase include mobile health and the fields of electronic medical records (EMR) and EHR, e.g., Huerta et al. ( 2013 ); Kim and Kwon ( 2019 ). The authors cover these themes mostly from an HIS creation perspective; thus, they deal with concrete concepts, prototypes, or even implemented systems. In the evaluation phase, just nine papers deal with HIS innovation – a good example being Bullinger et al. ( 2012 ), who investigated the adoption of open health platforms. We may conclude that, in most cases, evaluation is related to more established technologies of HIS. As expected, most articles in this phase rely on practice-oriented/empirical work (as opposed to theory-driven/conceptual work). Just two papers (Ghanvatkar & Rajan, 2019 ; Lin et al., 2017 ) deal with health analytics and data mining, one of the emerging topics of HIS.

Zooming out: key findings of the literature analysis across phases

Having elaborated on the key findings within each phase of HIS research, we now ‘zoom out’ (Benbya et al., 2020 ; Gaskin et al., 2014 ) to recognize the bigger picture. Thereby, we ‘black-box’ the concrete research themes (e.g., HIS implementation, health analytics, HIS innovation) to focus on clusters across phases, highlighting the breadth that HIS research encompasses (Leroy et al., 2013 ). In particular, while we focused on analysing the main topics within the different phases of HIS research in the zoom-in section, we now abstract from those to perform a comparative analysis of emerging clusters across those phases by zooming out. We do so by comparing the different clusters, taking into account the aspects of the level of observation and the research foci, which gave us the opportunity to identify areas of strong emphasis and potential gaps.

In particular, each author first conducted this comparative analysis on their own and then discussed and identified the potential weaknesses together. This was done in two rounds of discussion. In particular, it became obvious which areas hold immense potential for further research in healthcare (especially the penetration of new, initially non-healthcare actors, such as tech companies or other providers pushing into the industry). We summarize these potentials for research by proposing four pathways that can help HIS research to broaden its focus so that we can better understand and contribute to current developments. Notably, we expect that these insights will help to assess the state-of-the-art of HIS research and its preparedness for dealing with the consequences of Covid-19 and further pandemics, as well as for coping with associated exogenous shocks.

In zooming out, we identified discrepancies between phase 1 (problem identification and research issues) and the subsequent phases. In particular, the diversity of topics was considerably lower when it came to how researchers determined strategies; created, demonstrated, used, and maintained HISs; and coped with the consequences thereof. We observed that researchers pointed to a diverse set of issues that span all levels of observation, especially in HIS theorization, focusing on topics such as trust in HIS, data analytics, and problems associated with the carrying out of national health programs. Surprisingly, although we can assume that researchers recognized the multidimensionality of issues as a motivation to conduct HIS research, they did not seem to approach HIS research issues in a comprehensive and consistent way.

To illustrate this assertion, we point to the ‘shift of clusters’ that can be observed when comparing the single phases, from problem identification to the evaluation of HIS. We note that clusters increasingly migrate ‘downwards’ (i.e., from the ecosystem level down to the infrastructure level) and become even fewer. In line with Braa et al. ( 2004 ), we suggest that extant HIS research has identified a multitude of interrelated issues but has faced problems in translating these approaches into concrete and holistic solutions. This is reflected in the lower number of, and reduced diversity in, clusters across research themes when we move through the HIS research phases. Thus, we conclude that future HIS research can be broadened by taking into account the following pathway:

HIS research is well-prepared and able to identify and theorize on systemic problems related to the healthcare industry. Nonetheless, it has the potential to address these problems more thoroughly – i.e., to find solutions that are as diverse as the problems and, thus, suitable for coping with issues in the healthcare industry characterized by the involvement of multiple actors, such as governments, healthcare providers, tech companies, and their interactions in diverse ecosystems (pathway 1).

As we have seen, HIS research has tended to focus on important but incremental improvements to existing infrastructures, particularly in the phases of demonstration and evaluation, with the aim of presenting new IS artefacts and conceptual or practical solutions. For instance, Choi and Tulu ( 2017 ) considered improvements in user interfaces to decrease the complexity of mobile health applications using incremental interface design changes and altering touch techniques. Similarly, Roehrig and Knorr ( 2000 ) designed patient-centred access controls that can be implemented in existing infrastructures to increase the privacy and security of EHRs and avoid malicious access and misuse of patient health information by third parties.

While we sincerely acknowledge these contributions and wish to emphasize the multitude of papers that are concerned with enhancements to existing infrastructures, we would like to shift the view to the major challenges in HIS research. These challenges include combating global and fast-spreading diseases (e.g., malaria, tuberculosis, Covid-19) and tracking health statuses accurately and efficiently, especially in developing countries. All of these challenges necessitate global and comprehensive solutions, spanning individuals, organizations, and nations, and have to be embedded in a global ecosystem (Winter & Butler, 2011 ). Such grand challenges are, by nature, not easy to cope with, and the intention to develop a comprehensive solution from the perspective of IS researchers seems almost misguided. However, HIS research is currently missing the opportunity to make an impact, despite the discipline’s natural intersection with essential aspects of the healthcare industry (i.e., its infrastructures, technologies, and stakeholders, and the interdependencies between these components). Thus, we assert that:

HIS research has often focused on necessary and incremental improvements to existing IS artefacts and infrastructures. We see potential in shifting this focus to developing solutions that combine existing IS artefacts to allow for exchange of information and the creation of open systems, which will enhance support for and understanding of the emergence of ecosystems (pathway 2).

By focusing on incremental improvements, HIS research has become extraordinarily successful in solving isolated issues, especially in relation to the problems of patients and health service providers (e.g., hospitals and general practitioners). However, we observed during our analysis that spillover effects were seldom investigated. When, for example, a new decision support system in a hospital was introduced, positive consequences for patients, such as more accurate diagnoses, were rarely of interest to the research. In fact, our meta-analysis revealed that the level of observation for the majority of papers matched the level of analysed effects. While it is valid to investigate productivity and efficiency gains by introducing a hospital-wide decision support system, we are convinced that spillover effects (for instance, on patients) should also be within the focus of HIS research. Therein, we suggest that HIS research has not focused primarily on patients and their well-being but on IS infrastructures and artefacts. However, patient well-being is the ultimate direct (or indirect) goal of any HIS research (by increasing the accuracy and shortening the time of diagnosis, improving treatment success rates, etc.). Thus, we propose that:

HIS research is experienced in solving isolated issues related to the daily processes of healthcare providers; however, we see much potential in considering the value that is delivered by focusing on patient-centricity (pathway 3).

Putting the patient at the centre of HIS research implies shifting the focus of researchers to the patient’s own processes. The question remains as to how HIS researchers can support patient-centricity. While this is only possible by understanding patients’ processes, we also see the need to understand the whole system – i.e., the ecosystem in which patients’ processes are embedded. The ecosystem perspective needs to consider networked services and organizations, including resources and how they interact with stakeholders of the healthcare industry (including patients). To date, we observe, across phases the ecosystem perspective has largely been neglected. To be precise, although HIS research seems to be aware of the multilevel aspects of healthcare issues in the problem identification phase, researchers appear to stop or are hindered from developing solutions that go beyond the development of prototypes (Braa et al., 2004 ). Thus, we find that:

HIS research is capable of theorizing on an ecosystem level (i.e., capturing the complexity of the socio-technical health system), but would benefit from increasing the transfer of these insights into research so as to develop holistic solutions (pathway 4).

Looking at the strengths of HIS research, the reviewed papers accentuate the unique contribution that IS researchers can make to better understand and design IS artefacts for the healthcare context. This has been achieved by analysing empirical data and exploring contextual influences through the application and elaboration of IS theories (LeRouge et al., 2007 ). At the same time, our literature review shows the incredible diversity and high level of complexity of issues related to HISs, indicating that we need solutions characterized by holism and the inclusion of multiple actors (i.e., an integrative ecosystem perspective). So far, by concentrating on incremental improvements to existing infrastructures HIS research has widely failed to reach the necessary holistic level.

We would like to emphasize that we recognize the value of all previous approaches. Yet, it is necessary to ask whether we as IS researchers are in a position to identify current developments in the healthcare industry and to anticipate the consequences triggered by pandemics or other waves of disease. We acknowledge that this will be difficult unless we take a more holistic view and try to understand connections in the health ecosystems. Regarding whether HIS research is in a position to capture and anticipate consequences of the current push of tech companies in the healthcare industry catalysed, for example, by Covid-19, we assert that this is hardly the case, even if IS research is well-placed to interpret the expected socio-technical changes and adaptations within healthcare. Given the enormous potential for disruption caused by, for instance, pandemics and its consequences, such as the intrusion of technology companies into the market, it is now time to question and redefine the role of HIS research so that it can generate decisive impacts on the developments in this industry.

• Research agenda

To support HIS research for the transformation of the healthcare industry, we develop a research agenda that is informed by complexity theory. This theory implies that complex, socio-technical systems such as the healthcare industry can fluctuate between different states, ranging from homogenous forms of coevolution (i.e., a state where emergent structures and processes become similar to each other) to chaotic systems that are characterized by increasing levels of tension, which might result in extreme outcomes such as catastrophes or crises (Benbya et al., 2020 ).

While coevolution and chaos represent possible extreme states, the current situation – i.e., the penetration of tech companies into the healthcare industry – is best described by the dynamic process of emergence. Emergence is characterized by a disequilibrium, which implies unpredictability of outcomes that may lead to new structures, patterns, and properties within a system characterized by self-organization and bursts of amplification (Benbya et al., 2020 ; Kozlowski et al., 2013 ). Given the dynamics resulting from this, it seems impossible to predict the future; however, it is not impossible to prepare for it.

In particular, the current dynamics within the healthcare industry necessitate an understanding of exponential progress, not as the ability to foresee well-defined events in space and time, but as an anticipation of the consequences of emerging states and dynamic adaptive behaviours within the industry (Benbya et al., 2020 ). The following research agenda for HIS research is thus structured along three key issues: anticipating the range of actors’ behaviours, determining boundaries and fostering collaboration in the healthcare industry, and creating sustainable knowledge ecosystems.

According to these key issues, Table 6 offers guiding questions for HIS researchers. Addressing all issues will contribute to an understanding of the entire healthcare industry and the development of holistic solutions for a multitude of health issues by involving different actors (e.g., patients, hospitals, professionals, governments, NGOs). However, we propose approaching the agenda stepwise, in the order of the key issues, first looking at the range of behaviours and consequences of current developments for actors, then focusing on the blurring lines of the healthcare industry, and finally investigating the dissemination and sharing of knowledge, which we see as the ultimate means to connect actors and infrastructures to create a joint ecosystem. Table 6 thereby provides key guiding statements and exemplary research questions for future HIS research that support researchers in taking one of the aforementioned pathways. We structured guiding statements along three major areas of improvement. In addition, we offer exemplary research questions to these statements, as well as inspiring studies from other industries that have faced similar challenges and have been studied and supported by researchers.

Area of improvement 1: Anticipating the range of actor behaviours

As healthcare systems are becoming more open – for example, through the penetration of new market actors and the use of increasingly comprehensive and advanced health technologies – accurately determining the boundaries of an industry and its key actors is becoming more difficult. To model these systems, we must carefully model every interaction in them (Benbya et al., 2020 ), which first requires HIS researchers to identify potential actors in the ecosystem rather than predetermining assumed industry boundaries. As actors are not always evident, we follow Benbya et al. ( 2020 ) in proposing Salthe’s ( 1985 ) three-level specification, assisting researchers in identifying actors at the focal level of what is actually observed (e.g., hospitals, patients, and general practitioners) and its relations with the parts described at the lower level (e.g., administrators and legal professionals), taking into account entities or processes at a higher level in which actors at the focal level are embedded (e.g., national health system structures and supporting industries, such as the pharmaceutical or tech industries). These examples are only illustrative, and criteria for levels have to be suggested and discussed for each research endeavour.

To anticipate future developments in the healthcare industry, we also need to analyse the strategies and interests of actors for joining or staying in the healthcare industry. This is especially important because, like other complex socio-technical systems, the healthcare industry is made up of large numbers of actors that influence each other in nonlinear ways, continually adapting to internal or external tensions (Holland et al., 1996 ). If tension rises above a certain threshold, we might expect chaos or extreme outcomes. As these are not beneficial for the actors in the system, the eventual goal is to align actors’ interests and strategies across a specific range of behaviour to foster coevolution. This allows for multi-layered ecosystems that encourage joint business strategies in competitive landscapes, as well as the alignment of business processes and IT across actors (Lee et al., 2013 ).

Area of improvement 2: Determining boundaries and fostering collaboration

Actors build the cornerstones of the healthcare industry. Thus, if we want to understand and capture its blurring boundaries, there is a need to understand the complex causality of interactions among heterogeneous actors. In particular, scholars have emphasized that, in complex systems, outcomes rarely have a single cause but rather result from the interdependence of multiple conditions, implying that there exist multiple pathways from an input to an output (Benbya et al., 2020 ). To capture interaction, we follow Kozlowski et al. ( 2013 ), who envisioned a positive feedback process including bottom-up dynamic interaction among lower-level actors (upward causation), which over time manifests at higher, collective levels, while higher-level actors influence interaction at lower levels (downward causation). As these kinds of causalities shape interaction within healthcare ecosystems as well as at their boundaries, HIS researchers need to account for multi-directional causality in the form of upward, downward, and circular causality (Benbya et al., 2020 ; Kim, 1992 ).

Understanding casualties among actors in the healthcare industry is important for harnessing the advantages of the blurring of boundaries – e.g., by making use of the emergent ecosystem for launching innovation cycles (Hacklin, 2008 ). However, first, HIS researchers increasingly need to consider the ecosystem perspective by investigating interactions among actors and the role of IS infrastructures in fostering collaborative health innovations. We propose a focus on radical innovation, which is necessary to address the diversity and interdependence of issues present in the healthcare industry by putting the patient at the core of all innovation efforts. HIS researchers, however, need to break down the boundaries between different innovation phases and innovation agencies, including a higher level of unpredictability and overlap in their time horizons (Nambisan et al., 2017 ). Notably, this requires actors in the healthcare industry to discover new meaning around advanced technologies and IS infrastructures whose design needs to facilitate shared meaning among a diverse set of actors, thereby fuelling radical digital innovations (Nambisan et al., 2017 ).

Area of improvement 3: Creating sustainable knowledge ecosystems

We define knowledge dissemination and sharing as the ultimate means of connecting actors and aligning actions within common frameworks to shape an inclusive healthcare ecosystem. Paving the way for inclusive healthcare ecosystems is thus necessary to address the current shortcomings of HIS research as elaborated in the previous section.

Addressing knowledge dissemination and sharing is thereby of the utmost importance as we look at the healthcare industry in the current phase of emergence. This means that the industry might go through several transition phases in which existing actors, structures, and causal relationships dissipate and new ones emerge, resulting in a different set of causal relationships and eventually altering knowledge claims (Benbya et al., 2020 ). Creating a permeable and sustainable knowledge management system is necessary to ensure the transfer of knowledge for the best outcomes for the patient while securing the intellectual property rights and competitive advantages of diverse actors such as hospitals and other healthcare providers.

To be precise, we argue that to design sustainable knowledge management systems, HIS researchers need to implement systems with structures that create mutual benefits – i.e., encourage knowledge dissemination and sharing (e.g., open innovation) by actors in the healthcare industry. In a comprehensive and sustainable knowledge management system, however, not only corporations but also patients should be encouraged to share knowledge. Using this information, researchers and health service providers will be enabled to create optimized infrastructures, processes, and products (e.g., for predictive algorithms that improve treatment accuracy, or for assessing the likelihood of the occurrence of certain diseases and even of pandemics). At the same time, the trustworthiness of predictions and the anonymity of health information (and thus privacy) must be ensured. Bridging this duality of data sharing and knowledge dissemination, on the one hand, and protection of health information, on the other, is therefore essential for future HIS research.

This paper analyses the HIS literature within the IS research domain, prompted by the question of whether IS researchers are prepared to capture and anticipate exogenous changes and the consequences of current developments in the healthcare industry. While this review is limited to insights into the IS research domain and does not claim to offer insights into the health literature in general or related publications (e.g., governmental publications), we disclose several shortcomings and three key issues. Based on these, we provide initial guidance on how IS research can develop so that it is prepared to capture the expected large and long-lasting changes from current and possible future pandemics as well as the necessary adaptation of global healthcare industries affecting human agencies and experiences in all dimensions. Thus, while adaptations in the healthcare industry are already emerging, IS researchers have yet to develop a more comprehensive view of the healthcare industry. For this purpose, we provide a research agenda that is structured in terms of three areas of improvement: anticipating the range of actors’ behaviours, determining boundaries and fostering collaborations among actors in the healthcare industry, and creating sustainable knowledge management systems. In particular, addressing these areas will assist IS researchers in balancing the shortcomings of current HIS research with the unique contribution that IS research plays in analysing, advancing, and managing the healthcare industry. We are confident that IS research is not only capable of anticipating changes and consequences but also of actively shaping the future of the healthcare industry by promoting sustainable healthcare ecosystems, cultivating structures of mutual benefit and cooperation between actors, and realigning IS research to face the imminent transformation of the healthcare industry. IS research cannot contribute directly to solving the current pandemic problems; however, it can contribute indirectly triggering timely adaptations of novel technologies in global health systems, and proposing new processes, business models, and systematic changes that will prepare health systems to cope with increasing digitalization and emerging players whose push into the market enabled by the exogenous effects triggered by the pandemic.

While we are confident that the proposed research agenda based on the analysis of HIS literature provides fruitful arrays for being prepared in anticipating the future role of IS research for the healthcare industry, our results need to be reflected in light of their shortcomings. First and foremost, we recognize that the selection of literature, which is limited to the IS research domain, excludes other contextual factors that are not primarily considered by IS researchers. Thus, we cannot assume completeness, providing instead a broad overview of current issues in HIS research. In addition, possible biases may have arisen due to the qualitative analysis approach used. By independently coding and discussing codes to the point of theoretical saturation, we are confident that we largely eliminated biases in the thematic analysis. However, data saturation could not be achieved. This means that further insights could have emerged through the addition of other database searches and journals with a broader scope. Additionally, the initial sorting of papers into single defined phases of DSR research restricted multiple assignments that could have led to different results. However, we consider sorting as a necessary step of abstraction, especially given the large number of papers analysed.

We deliberately considered IS research, for which we have developed an agenda for potential future research avenues. For each of those avenues, researchers should go deeper into the subject matter in order to examine the complexity of the paths shown and to include them in the analysis (e.g., through in-depth case studies). However, it is also clear from the issues identified that IS researchers cannot solve current challenges by working on the pathways alone. In fact, the issues identified in the research agenda are only the starting point for further research, which should address the proposed issues step by step and in cooperation with other research disciplines. The latter is likely to generate further and deeper-rooted problems, as well as, in turn, future paths for research. Nevertheless, we are confident that this paper provides an important first step in opening up HIS research to better understand current developments in the healthcare industry. Further, by following and enhancing the proposed research pathways, we believe that HIS research can contribute to and support changes already taking place in the healthcare industry.

Change history

20 december 2021.

A Correction to this paper has been published: https://doi.org/10.1007/s12525-021-00518-8

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Ostern, N., Perscheid, G., Reelitz, C. et al. Keeping pace with the healthcare transformation: a literature review and research agenda for a new decade of health information systems research. Electron Markets 31 , 901–921 (2021). https://doi.org/10.1007/s12525-021-00484-1

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Why is it important to do a literature review in research?

The importance of scientific communication in the healthcare industry

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 “A substantive, thorough, sophisticated literature review is a precondition for doing substantive, thorough, sophisticated research”. Boote and Baile 2005

Authors of manuscripts treat writing a literature review as a routine work or a mere formality. But a seasoned one knows the purpose and importance of a well-written literature review.  Since it is one of the basic needs for researches at any level, they have to be done vigilantly. Only then the reader will know that the basics of research have not been neglected.

The aim of any literature review is to summarize and synthesize the arguments and ideas of existing knowledge in a particular field without adding any new contributions.   Being built on existing knowledge they help the researcher to even turn the wheels of the topic of research.  It is possible only with profound knowledge of what is wrong in the existing findings in detail to overpower them.  For other researches, the literature review gives the direction to be headed for its success. 

The common perception of literature review and reality:

As per the common belief, literature reviews are only a summary of the sources related to the research. And many authors of scientific manuscripts believe that they are only surveys of what are the researches are done on the chosen topic.  But on the contrary, it uses published information from pertinent and relevant sources like

• Scholarly books
• Scientific papers
• Latest studies in the field
• Established school of thoughts
• Relevant articles from renowned scientific journals

and many more for a field of study or theory or a particular problem to do the following:

• Summarize into a brief account of all information
• Synthesize the information by restructuring and reorganizing
• Critical evaluation of a concept or a school of thought or ideas
• Familiarize the authors to the extent of knowledge in the particular field
• Encapsulate
• Compare & contrast

By doing the above on the relevant information, it provides the reader of the scientific manuscript with the following for a better understanding of it:

• It establishes the authors’  in-depth understanding and knowledge of their field subject
• It gives the background of the research
• Portrays the scientific manuscript plan of examining the research result
• Illuminates on how the knowledge has changed within the field
• Highlights what has already been done in a particular field
• Information of the generally accepted facts, emerging and current state of the topic of research
• Identifies the research gap that is still unexplored or under-researched fields
• Demonstrates how the research fits within a larger field of study
• Provides an overview of the sources explored during the research of a particular topic

Importance of literature review in research:

The importance of literature review in scientific manuscripts can be condensed into an analytical feature to enable the multifold reach of its significance.  It adds value to the legitimacy of the research in many ways:

• Provides the interpretation of existing literature in light of updated developments in the field to help in establishing the consistency in knowledge and relevancy of existing materials
• It helps in calculating the impact of the latest information in the field by mapping their progress of knowledge.
• It brings out the dialects of contradictions between various thoughts within the field to establish facts
• The research gaps scrutinized initially are further explored to establish the latest facts of theories to add value to the field
• Indicates the current research place in the schema of a particular field
• Provides information for relevancy and coherency to check the research
• Apart from elucidating the continuance of knowledge, it also points out areas that require further investigation and thus aid as a starting point of any future research
• Justifies the research and sets up the research question
• Sets up a theoretical framework comprising the concepts and theories of the research upon which its success can be judged
• Helps to adopt a more appropriate methodology for the research by examining the strengths and weaknesses of existing research in the same field
• Increases the significance of the results by comparing it with the existing literature
• Provides a point of reference by writing the findings in the scientific manuscript
• Helps to get the due credit from the audience for having done the fact-finding and fact-checking mission in the scientific manuscripts
• The more the reference of relevant sources of it could increase more of its trustworthiness with the readers
• Helps to prevent plagiarism by tailoring and uniquely tweaking the scientific manuscript not to repeat other’s original idea
• By preventing plagiarism , it saves the scientific manuscript from rejection and thus also saves a lot of time and money
• Helps to evaluate, condense and synthesize gist in the author’s own words to sharpen the research focus
• Helps to compare and contrast to  show the originality and uniqueness of the research than that of the existing other researches
• Rationalizes the need for conducting the particular research in a specified field
• Helps to collect data accurately for allowing any new methodology of research than the existing ones
• Enables the readers of the manuscript to answer the following questions of its readers for its better chances for publication
• What do the researchers know?
• What do they not know?
• Is the scientific manuscript reliable and trustworthy?
• What are the knowledge gaps of the researcher?

22. It helps the readers to identify the following for further reading of the scientific manuscript:

• What has been already established, discredited and accepted in the particular field of research
• Areas of controversy and conflicts among different schools of thought
• Unsolved problems and issues in the connected field of research
• The emerging trends and approaches
• How the research extends, builds upon and leaves behind from the previous research

A profound literature review with many relevant sources of reference will enhance the chances of the scientific manuscript publication in renowned and reputed scientific journals .

References:

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A systematic literature review of researchers’ and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data

• Elizabeth Hutchings   ORCID: orcid.org/0000-0002-6030-954X 1 ,
• Max Loomes   ORCID: orcid.org/0000-0003-1042-0968 2 ,
• Phyllis Butow   ORCID: orcid.org/0000-0003-3562-6954 2 , 3 , 4 &
• Frances M. Boyle   ORCID: orcid.org/0000-0003-3798-1570 1 , 5  

Systematic Reviews volume  9 , Article number:  240 ( 2020 ) Cite this article

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A systematic literature review of researchers and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted using electronic data searching. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design, or disease setting. Two authors were involved in all stages of the review process; conflicts were resolved by consensus. Data was extracted independently using a pre-piloted data extraction template. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Eighteen eligible articles were identified, and articles were categorised into four key themes: barriers, facilitators, access, and ownership; 14 subthemes were identified. While respondents were generally supportive of data sharing, concerns were expressed about access to data, data storage infrastructure, and consent. Perceptions of data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region. Young researchers were less willing to share data; they were willing to share in circumstances where they were acknowledged. While there is a general consensus that increased data sharing in health is beneficial to the wider scientific community, substantial barriers remain.

Systematic review registration

PROSPERO CRD42018110559

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Healthcare systems generate large amounts of data; approximately 80 mB of data are generated per patient per year [ 1 ]. It is projected that this figure will continue to grow with an increasing reliance on technologies and diagnostic capabilities. Healthcare data provides an opportunity for secondary data analysis with the capacity to greatly influence medical research, service planning, and health policy.

There are many forms of data collected in the healthcare setting including administrative and clinical trial data which are the focus of this review. Administrative data collected during patients’ care in the primary, secondary, and tertiary settings can be analysed to identify systemic issues and service gaps, and used to inform improved health resourcing. Clinical trials play an essential role in furthering our understanding of disease, advancing new therapeutics, and developing improved supportive care interventions. However, clinical trials are expensive and can take several years to complete; a frequently quoted figure is that it takes 17 years for 14% of clinical research to benefit the patient [ 2 , 3 ].

Those who argue for increased data sharing in healthcare suggest that it may lead to improved treatment decisions based on all available information [ 4 , 5 ], improved identification of causes and clinical manifestations of disease [ 6 ], and provide increased research transparency [ 7 ]. In rare diseases, secondary data analysis may greatly accelerate the medical community’s understanding of the disease’s pathology and influence treatment.

Internationally, there are signs of movement towards greater transparency, particularly with regard to clinical research data. This change has been driven by governments [ 8 ], peak bodies [ 9 ], and clinician led initiatives [ 5 ]. One initiative led by the International Council of Medical Journal Editors (ICMJE) now requires a data sharing plan for all clinical research submitted for publication in a member scientific journal [ 9 ]. Further, international examples of data sharing can be seen in projects such as The Cancer Genome Atlas (TCGA) [ 10 ] dataset and the Surveillance, Epidemiology, and End Results (SEER) [ 11 ] database which have been used extensively for cancer research.

However, consent, data ownership, privacy, intellectual property rights, and potential for misinterpretation of data [ 12 ] remain areas of concern to individuals who are more circumspect about changing the data sharing norm. To date, there has been no published synthesis of views on data sharing from the perspectives of diverse professional stakeholders. Thus, we conducted a systematic review of the literature on the views of researchers and healthcare professionals regarding the sharing of health data.

This systematic literature review was part of a larger review of articles addressing data sharing, undertaken in accordance with the PRISMA statement for systematic reviews and meta-analysis [ 13 ]. The protocol was prospectively registered on PROSPERO ( www.crd.york.ac.uk /PROSPERO, CRD42018110559).

The following databases were searched: EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO, and ProQuest. The final search was conducted on 21 October 2018. No date restrictions were placed on the search; key search terms are listed in Table 1 . Papers were considered eligible if they: were published in English; were published in a peer review journal; reported original research, either qualitative or quantitative with any study design, related to data sharing in any disease setting; and included subjects over 18 years of age. Systematic literature reviews were included in the wider search but were not included in the results. Reference list and hand searching were undertaken to identify additional papers. Papers were considered ineligible if they focused on electronic health records, biobanking, or personal health records or were review articles, opinion pieces/articles/letters, editorials, or theses from masters or doctoral research. Duplicates were removed and title and abstract and full-text screening were undertaken using the Cochrane systematic literature review program Covidence [ 14 ]. Two authors were involved in all stages of the review process; conflicts were resolved by consensus.

Quality and bias were assessed at a study level using the QualSyst system for quantitative and qualitative studies as described by Kmet et al. [ 15 ]. A maximum score of 20 is assigned to articles of high quality and low bias; the final QualSyst score is a proportion of the total, with a possible score ranging from 0.0 to 1.0 [ 15 ].

Data extraction was undertaken using a pre-piloted form in Microsoft Office Excel. Data points included author, country and year of study, study design and methodology, health setting, and key themes and results. Where available, detailed information on research participants was extracted including age, sex, clinical/academic employment setting, publication and grant history, career stage, and world region.

Quantitative data were summarised using descriptive statistics. Synthesis of qualitative findings used a meta-ethnographic approach, in accordance with guidelines from Lockwood et al. [ 16 ].The main themes of each qualitative study were first identified and then combined, if relevant, into categories of commonality. Using a constant comparative approach, higher order themes and subthemes were developed. Quantitative data relevant to each theme were then incorporated. Using a framework analysis approach as described by Gale et al. [ 17 ], the perspectives of different professional groups (researchers, healthcare professionals, data custodians, and ethics committees) towards data sharing were identified. Where differences occurred, they are highlighted in the results. Similarly, where systematic differences according to other characteristics (such as age or years of experience), these are highlighted.

This search identified 4019 articles, of which 241 underwent full-text screening; 73 articles met the inclusion criteria for the larger review. Five systematic literature reviews were excluded as was one article which presented duplicate results; this left a total of 67 articles eligible for review. See Fig. 1 for the PRISMA diagram describing study screening.

PRIMSA flow diagram (attached)

This systematic literature review was originally developed to identify attitudes towards secondary use and sharing of health administrative and clinical trial data in breast cancer. However, as there was a paucity of material identified specifically related to this group, we present the multidisciplinary results of this search, and where possible highlight results specific to breast cancer, and cancer more generally. We believe that the material identified in this search is relevant and reflective of the wider attitudes towards data sharing within the scientific and medical communities and can be used to inform data sharing strategies in breast cancer.

Eighteen [ 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ] of the 67 articles addressed the perspectives of clinical and scientific researchers, data custodians, and ethics committees and were analysed for this paper (Table 2 ). The majority ( n = 16) of articles focused on the views of researchers and health professionals, [ 18 , 19 , 20 , 21 , 22 , 24 , 25 , 26 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], only one article focused on data custodians [ 27 ] and ethics committees [ 23 ] respectively. Four articles [ 18 , 19 , 21 , 35 ] included a discussion on the attitudes of both researchers and healthcare professionals and patients; only results relating to researchers/clinicians are included in this analysis (Fig. 1 ).

Study design, location, and disciplines

Several study methodologies were used, including surveys ( n = 11) [ 24 , 25 , 26 , 27 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], interviews and focus groups ( n = 6) [ 18 , 19 , 20 , 21 , 22 , 23 ], and mixed methods ( n = 1) [ 28 ]. Studies were conducted in a several countries and regions; a breakdown by country and study is available in Table 3 .

In addition to papers focusing on general health and sciences [ 18 , 21 , 22 , 24 , 25 , 26 , 29 , 30 , 31 , 32 , 33 , 34 ], two articles included views from both science and non-science disciplines [ 27 , 28 ]. Multiple sclerosis (MS) [ 19 ], mental health [ 35 ], and human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS)/tuberculosis (TB) [ 20 ] were each the subject of one article.

Study quality

Results of the quality assessment are provided in Table 2 . QualSyst [15] scores ranged from 0.7 to 1.0 (possible range 0.0 to 1.0). While none were blinded studies, most provided clear information on respondent selection, data analysis methods, and justifiable study design and methodology.

Four key themes, barriers, facilitators, access, and ownership were identified; 14 subthemes were identified. A graphical representation of article themes is presented in Fig. 2 . Two articles reflect the perspective of research ethics committees [ 23 ] and data custodians [ 27 ]; concerns noted by these groups are similar to those highlighted by researchers and healthcare professionals.

Graphic representation of key themes and subthemes identified (attached)

Barriers and facilitators

Reasons for not sharing.

Eleven articles identified barriers to data sharing [ 20 , 22 , 24 , 25 , 27 , 29 , 30 , 31 , 32 , 33 , 34 ]. Concerns cited by respondents included other researchers taking their results [ 24 , 25 ], having data misinterpreted or misattributed [ 24 , 27 , 31 , 32 ], loss of opportunities to maximise intellectual property [ 24 , 25 , 27 ], and loss of publication opportunities [ 24 , 25 ] or funding [ 25 ]. Results of a qualitative study showed respondents emphasised the competitive value of research data and its capacity to advance an individual’s career [ 20 ] and the potential for competitive disadvantage with data sharing [ 22 ]. Systematic issues related to increased data sharing were noted in several articles where it was suggested the barriers are ‘deeply rooted in the practices and culture of the research process as well as the researchers themselves’ [ 33 ] (p. 1), and that scientific competition and a lack of incentive in academia to share data remain barriers to increased sharing [ 30 ].

Insufficient time, lack of funding, limited storage infrastructure, and lack of procedural standards were also noted as barriers [ 33 ]. Quantitative results demonstrated that the researchers did not have the right to make the data public or that there was no requirement to share by the study sponsor [ 33 ]. Maintaining the balance between investigator and funder interests and the protection of research subjects [ 31 ] were also cited as barriers. Concerns about privacy were noted in four articles [ 25 , 27 , 29 , 30 ]; one study indicated that clinical researchers were significantly more concerned with issues of privacy compared to scientific researchers [ 25 ]. The results of one qualitative study indicated that clinicians were more cautious than patients regarding the inclusion of personal information in a disease specific registry; the authors suggest this may be a result of potential for legal challenges in the setting of a lack of explicit consent and consistent guidelines [ 19 ]. Researchers, particularly clinical staff, indicated that they did not see sharing data in a repository as relevant to their work [ 29 ]

Trust was also identified as a barrier to greater data sharing [ 32 ]. Rathi et al. identified that researchers were likely to withhold data if they mistrusted the intent of the researcher requesting the information [ 32 ]. Ethical, moral, and legal issues were other potential barriers cited [ 19 , 22 ]. In one quantitative study, 74% of respondents ( N = 317) indicated that ensuring appropriate data use was a concern; other concerns included data not being appropriate for the requested purpose [ 32 ]. Concerns about data quality were also cited as a barrier to data reuse; some respondents suggested that there was a perceived negative association of data reuse among health scientists [ 30 ].

Reasons for sharing

Eleven articles [ 19 , 20 , 21 , 22 , 24 , 25 , 29 , 30 , 31 , 32 , 33 ] discussed the reasons identified by researchers and healthcare professionals for sharing health data; broadly the principle of data sharing was seen as a desirable norm [ 25 , 31 ]. Cited benefits included improvements to the delivery of care, communication and receipt of information, impacts on care and quality of life [ 19 ], contributing to the advancement of science [ 20 , 24 , 29 ], validating scientific outputs, reducing duplication of scientific effort and minimising research costs [ 20 ], and promoting open science [ 31 , 32 ]. Professional reasons for sharing data included academic benefit and recognition, networking and collaborative opportunities [ 20 , 24 , 29 , 31 ], and contributing to the visibility of their research [ 24 ]. Several articles noted the potential of shared data for enabling faster access to a wider pool of patients [ 21 ] for research, improved access to population data for longitudinal studies [ 22 ], and increased responsiveness to public health needs [ 20 ]. In one study, a small percentage of respondents indicated that there were no benefits from sharing their data [ 24 ].

Analysis of quantitative survey data indicated that the perceived usefulness of data was most strongly associated with reuse intention [ 30 ]. The lack of access to data generated by other researchers or institutions was seen as a major impediment to progress in science [ 33 ]. In a second study, quantitative data showed no significant differences in reasons for sharing by clinical trialists’ academic productivity, geographic location, trial funding source or size, or the journal in which the results were published [ 32 ]. Attitudes towards sharing in order to receive academic benefits or recognition differed significantly based on the respondent’s geographic location; those from Western Europe were more willing to share compared to respondents in the USA or Canada, and the rest of the world [ 32 ].

Views on sharing

Seven articles [ 19 , 20 , 21 , 29 , 31 , 33 , 34 ] discussed researchers’ and healthcare professionals’ views relating to sharing data, with a broad range of views noted. Two articles, both qualitative, discussed the role of national registries [ 21 ], and data repositories [ 31 ]. Generally, there was clear support for national research registers and an acceptance for their rationale [ 21 ], and some respondents believed that sharing de-identified data through data repositories should be required and that when requested, investigators should share data [ 31 ]. Sharing de-identified data for reasons beyond academic and public health benefit were cited as a concern [ 20 ]. Two quantitative studies noted a proportion of researchers who believed that data should not be made available [ 33 , 34 ]. Researchers also expressed differences in how shared data should be managed; the requirement for data to be ‘gate-kept’ was preferred by some, while others were happy to relinquish control of their data once curated or on release [ 20 ]. Quantitative results indicated that scientists were significantly more likely to rank data reuse as highly relevant to their work than clinicians [ 29 ], but not all scientists shared data equally or had the same views about data sharing or reuse [ 33 ]. Some respondents argued that not all data were equal and therefore should only be shared in certain circumstances. This was in direct contrast to other respondents who suggested that all data should be shared, all of the time [ 20 ].

Differences by age, background, discipline, professional focus, and world region

Differences in attitudes towards shared data were noted by age, professional focus, and world region [ 25 , 27 , 33 , 34 ]. Younger researchers, aged between 20–39 and 40–49 years, were less likely to share their data with others (39% and 38% respectively) compared to other age groups; respondents aged over 50 years of age were more willing (46%) to share [ 33 ]. Interestingly, while less willing to share, younger researchers also believed that the lack of access to data was a major impediment to science and their research [ 33 ]. Where younger researchers were able to place conditions on access to their data, rates of willingness to share were increased [ 33 ].

Respondents from the disciplines of education, medicine/health science, and psychology were more inclined than others to agree that their data should not be available for others to use in the first place [ 34 ]. However, results from one study indicated that researchers from the medical field and social sciences were less likely to share compared to other disciplines [ 33 ]. For example, results of a quantitative study showed that compared to biologists, who reported sharing 85% of their data, medical and social sciences reported sharing their data 65% and 58% percent of the time, respectively [ 33 ].

One of the primary reasons for controlling access to data, identified in a study of data custodians, was due to a desire to avoid data misuse; this was cited as a factor for all surveyed data repositories except those of an interdisciplinary nature [ 27 ]. Limiting access to certain types of research and ensuring attribution were not listed as a concern for sociology, humanities or interdisciplinary data collections [ 27 ]. Issues pertaining to privacy and sensitive data were only cited as concerns for data collections related to humanities, social sciences, and biology, ecology, and chemistry; concerns regarding intellectual property were also noted [ 27 ]. The disciplines of biology, ecology, and chemistry and social sciences had the most policy restrictions on the use of data held in their repositories [ 27 ].

Differences in data sharing practices were also noted by world region. Respondents not from North American and European countries were more willing to place their data on a central repository; however, they were also more likely to place conditions on the reuse of their data [ 33 , 34 ].

Experience of data sharing

The experience of data sharing among researchers was discussed in nine articles [ 20 , 24 , 25 , 26 , 28 , 29 , 30 , 31 , 32 , 33 ]. Data sharing arrangements were highly individual and ranged from ad hoc and informal processes to formal procedures enforced by institutional policies in the form of contractual agreements, with respondents indicating data sharing behaviour ranging from sharing no data to sharing all data [ 20 , 26 , 31 ]. Quantitative data from one study showed that researchers were more inclined to share data prior to publication with people that they knew compared to those they did not; post publication, these figures were similar between groups [ 24 ]. While many researchers were prepared to share data, results of a survey identified a preference of researchers to collect data themselves, followed by their team, or by close colleagues [ 26 ].

Differences in the stated rate of data sharing compared to the actual rate of sharing [ 25 ] were noted. In a large quantitative study ( N = 1329), nearly one third of respondents chose not to answer whether they make their data available to others; of those who responded to the question, 46% reported they do not make their data electronically available to others [ 33 ]. By discipline, differences in the rate of refusal to share were higher in chemistry compared to non-science disciplines such as sociology [ 25 ]. Respondents who were more academically productive (> 25 articles over the past 3 years) reported that they have or would withhold data to protect research subjects less frequently than those who were less academically productive or received industry funding [ 32 ].

Attitudes to sharing de-identified data via data repositories was discussed in two articles [ 29 , 31 ]. A majority of respondents in one study indicated that de-identified data should be shared via a repository and that it should be shared when requested. A lack of experience in uploading data to repositories was noted as a barrier [ 29 ]. When data was shared, most researchers included additional materials to support their data including materials such as metadata or a protocol description [ 29 ].

Two articles [ 28 , 30 ] focused on processes and variables associated with sharing. Factors such as norms, data infrastructure/organisational support, and research communities were identified as important factors in a researcher’s attitude towards data sharing [ 28 , 30 ]. A moderate correlation between data reuse and data sharing suggest that these two variables are not linked. Furthermore, sharing data compared to self-reported data reuse were also only moderately associated (Pearson’s correlation of 0.25 ( p ≤ 0.001)) [ 26 ].

Predictors of data sharing and norms

Two articles [ 26 , 30 ] discussed the role of social norms and an individual’s willingness to share health data. Perceived efficacy and efficiency of data reuse were strong predictors of data sharing [ 26 ] and the development of a ‘positive social norm towards data sharing support(s)[ed] researcher data reuse intention’ [ 30 ] (p. 400).

Policy framework

The establishment of clear policies and procedures to support data sharing was highlighted in two articles [ 22 , 28 ]. The presence of ambiguous data sharing policies was noted as a major limitation, particularly in primary care and the increased adoption of health informatics systems [ 22 ]. Policies that support an efficient exchange system allowing for the maximum amount of data sharing are preferred and may include incentives such as formal recognition and financial reimbursement; a framework for this is proposed in Fecher et al. [ 28 ].

Research funding

The requirement to share data funded by public monies was discussed in one article [ 25 ]. Some cases were reported of researchers refusing to share data funded by tax-payer funds; reasons for refusal included a potential reduction in future funding or publishing opportunities [ 25 ].

Access and ownership

Articles relating to access and ownership were grouped together and seven subthemes were identified.

Access, information systems, and metadata

Ten articles [ 19 , 20 , 21 , 22 , 26 , 27 , 29 , 33 , 34 , 35 ] discussed the themes of access, information systems, and the use of metadata. Ensuring privacy protections in a prospective manner was seen as important for data held in registries [ 19 ]. In the setting of mental health, researchers indicated that patients should have more choices for controlling access to shared registry data [ 35 ]. The use of guardianship committees [ 19 ] or gate-keepers [ 20 ] was seen as important in ensuring the security and access to data held in registries by some respondents; however, many suggested that a researcher should relinquish control of the data collection once curated or released, unless embargoed [ 20 ]. Reasons for maintaining control over registry data included ensuring attribution, restricting commercial research, protecting sensitive (non-personal) information, and limiting certain types of research [ 27 ]. Concerns about security and confidentiality were noted as important and assurances about these needed to be provided; accountability and transparency mechanisms also need to be included [ 21 ]. Many respondents believed that access to the registry data by pharmaceutical companies and marketing agencies was not considered appropriate [ 19 ].

Respondents to a survey from medicine and social sciences were less likely to agree to have all data included on a central repository with no restrictions [ 33 ]; notably, this was also reflected in the results of qualitative research which indicated that health professionals were more cautious than patients about the inclusion of personal data within a disease specific register [ 19 ].

While many researchers stated that they commonly shared data directly with other researchers, most did not have experience with uploading data to repositories [ 29 ]. Results from a survey indicated that younger respondents have more data access restrictions and thought that their data is easier to access significantly more than older respondents [ 34 ]. In the primary care setting, concerns were noted about the potential for practitioners to block patient involvement in a registry by refusing access to a patient’s personal data or by not giving permission for the data to be extracted from their clinical system [ 21 ]. There was also resistance in primary care towards health data amalgamation undertaken for an unspecified purpose [ 22 ]; respondents were not in favour of systems which included unwanted functionality (do not want/need), inadequate attributes (capability and receptivity) of the practice, or undesirable impact on the role of the general practitioner (autonomy, status, control, and workflow) [ 22 ].

Access to ‘comprehensive metadata (is needed) to support the correct interpretation of the data’ [ 26 ] (p. 4) at a later stage. When additional materials were shared, most researchers shared contextualising information or a description of the experimental protocol [ 29 ]. The use of metadata standards was not universal with some respondents using their own [ 33 ].

Several articles highlighted the impact of data curation on researchers’ time [ 20 , 21 , 22 , 29 , 33 ] or finances [ 24 , 28 , 29 , 33 , 34 ]; these were seen as potential barriers to increased registry adoption [ 21 ]. Tasks required for curation included preparing data for dissemination in a usable format and uploading data to repositories. The importance of ensuring that the data is accurately preserved for future reuse was highlighted; it must be presented in a retriable and auditable manner [ 20 ]. The amount of time required to curate data ranged from ‘no additional time’ to ‘greater than ten hours’ [ 29 ]. In one study, no clinical respondent had their data in a sharable format [ 29 ]. In the primary care setting, health information systems which promote sharing were not seen as being beneficial if they required standardisation of processes and/or sharing of clinical notes [ 22 ]. Further, spending time on non-medical issues in a time poor environment [ 22 ] was identified as a barrier. Six articles described the provision of funding or technical support to ensure data storage, maintenance, and the ability to provide access to data when requested. All noted a lack of funding and time as a barrier to increased sharing data [ 20 , 24 , 28 , 29 , 33 , 34 ].

Results of qualitative research indicated a range of views regarding consent mechanisms for future data use [ 18 , 19 , 20 , 23 , 35 ]. Consenting for future research can be complex given that the exact nature of the study will be unknown, and therefore some respondents suggested that a broad statement on future data uses be included [ 19 , 20 ] during the consent process. In contrast, other participants indicated that the current consent processes were too broad and do not reflect patient preferences sufficiently [ 35 ]. The importance of respecting the original consent in all future research was noted [ 20 ]. It was suggested that seeking additional consent for future data use may discourage participation in the original study [ 20 ]. Differences in views regarding the provision of detailed information about sharing individual level data was noted suggesting that the researchers wanted to exert some control over data they had collected [ 20 ]. An opt-out consent process was considered appropriate in some situations [ 18 ] but not all; some respondents suggested that consent to use a patient’s medical records was not required [ 18 ]. There was support by some researchers to provide patients with the option to ‘opt-in’ to different levels of involvement in a registry setting [ 19 ]. Providing patients more granular choices when controlling access to their medical data [ 35 ] was seen as important.

The attitudes of ethics and review boards ( N = 30) towards the use of medical records for research was discussed in one article [ 23 ]. While 38% indicated that no further consent would be required, 47% required participant consent, and 10% said that the requirement for consent would depend on how the potentially identifying variables would be managed [ 23 ]. External researcher access to medical record data was associated with a requirement for consent [ 23 ].

Acknowledgement

The importance of establishing mechanisms which acknowledge the use of shared data were discussed in four articles [ 27 , 29 , 33 , 34 ]. A significant proportion of respondents to a survey believed it was fair to use other researchers’ data if they acknowledged the originator and the funding body in all disseminated work or as a formal citation in published works [ 33 ]. Other mechanisms for acknowledging the data originator included opportunities to collaborate on the project, reciprocal data sharing agreements, allowing the originator to review or comment on results, but not approve derivative works, or the provision of a list of products making use of the data and co-authorship [ 33 , 34 ]. In the setting of controlled data collections, survey results indicated that ensuring attribution was a motivator for controlled access [ 27 ]. Over half of respondents in one survey believed it was fair to disseminate results based either in whole or part without the data provider’s approval [ 33 ]. No significant differences in mechanisms for acknowledgement were noted between clinical and scientific participants; mechanisms included co-authorship, recognition in the acknowledgement section of publications, and citation in the bibliography [ 29 ]. No consentient method for acknowledging shared data reuse was identified [ 29 ].

Data ownership was identified as a potential barrier to increased data sharing in academic research [ 28 ]. In the setting of control of data collections, survey respondents indicated that they wanted to maintain some control over the dataset, which is suggestive of researchers having a perceived ownership of their research data [ 28 ]. Examples of researchers extending ownership over their data include the right to publish first and the control of access to datasets [ 28 ]. Fecher et al. noted that the idea of data ownership by the researcher is not a position always supported legally; ‘the ownership and rights of use, privacy, contractual consent and copyright’ are subsumed [ 28 ] (p. 15). Rather data sharing is restricted by privacy law, which is applied to datasets containing data from individuals. The legal uncertainty about data ownership and the complexity of law can deter data sharing [ 28 ].

Promotion/professional criteria

The role of data sharing and its relation to promotion and professional criteria were discussed in two articles [ 24 , 28 ]. The requirement to share data is rarely a promotion or professional criterion, rather the systems are based on grants and publication history [ 24 , 28 ]. One study noted that while the traditional link between publication history and promotion remains, it is ‘likely that funders will continue to get sub-optimal returns on their investments, and that data will continue to be inefficiently utilised and disseminated’ [ 24 ] (p. 49).

This systematic literature review highlights the ongoing complexity associated with increasing data sharing across the sciences. No additional literature meeting the inclusion criteria were identified in the period between the data search and the submission of this manuscript. Data gaps identified include a paucity of information specifically related to the attitudes of breast cancer researchers and health professionals towards the secondary use and sharing of health administrative and clinical trial data.

While the majority of respondents believed the principles of data sharing were sound, significant barriers remain: issues of consent, privacy, information security, and ownership were key themes throughout the literature. Data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region.

Addressing concerns of privacy, trust, and information security in a technologically changing and challenging landscape is complex. Ensuring the balance between privacy and sharing data for the greater good will require the formation of policy and procedures, which promote both these ideals.

Establishing clear consent mechanisms would provide greater clarity for all parties involved in the data sharing debate. Ensuring that appropriate consent for future research, including secondary data analysis and sharing and linking of datasets, is gained at the point of data collection, would continue to promote research transparency and provide healthcare professionals and researchers with knowledge that an individual is aware that their data may be used for other research purposes. The establishment of policy which supports and promotes the secondary use of data and data sharing will assist in the normalisation of this type of health research. With the increased promotion of data sharing and secondary data analysis as an established tool in health research, over time barriers to its use, including perceptions of ownership and concerns regarding privacy and consent, will decrease.

The importance of establishing clear and formal processes associated with acknowledging the use of shared data has been underscored in the results presented. Initiatives such as the Bioresource Research Impact Factor/Framework (BRIF) [ 36 ] and the Citation of BioResources in journal Articles (CoBRA) [ 37 ] have sought to formalise the process. However, increased academic recognition of sharing data for secondary analysis requires further development and the allocation of funding to ensure that collected data is in a usable, searchable, and retrievable format. Further, there needs to be a shift away from the traditional criteria of academic promotion, which includes research outputs, to one which is inclusive of a researcher’s data sharing history and the availability of their research dataset for secondary analysis.

The capacity to identify and use already collected data was identified as a barrier. Moves to make data findable, accessible, interoperable, and reusable (FAIR) have been promoted as a means to encourage greater accessibility to data in a systematic way [ 38 ]. The FAIR principles focus on data characteristics and should be interpreted alongside the collective benefit, authority to control, responsibility, and ethics (CARE) principles established by the Global Indigenous Data Alliance (GIDA) which a people and purpose orientated [ 39 ].

Limitations

The papers included in this study were limited to those indexed on major databases. Some literature on this topic may have been excluded if it was not identified during the grey literature and hand searching phases.

Implications

Results of this systematic literature review indicate that while there is broad agreement for the principles of data sharing in medical research, there remain disagreements about the infrastructure and procedures associated with the data sharing process. Additional work is therefore required on areas such as acknowledgement, curation, and data ownership.

While the literature confirms that there is overall support for data sharing in medical and scientific research, there remain significant barriers to its uptake. These include concerns about privacy, consent, information security, and data ownership.

Availability of data and materials

All data generated or analysed during this study are included in this published article.

Abbreviations

Bioresource Research Impact Factor/Framework

Collective benefit, authority to control, responsibility, and ethics

Citation of BioResources in journal Articles

Findable, accessible, interoperable, and reusable

Global Indigenous Data Alliance

Human immunodeficiency virus/acquired immunodeficiency

International Council of Medical Journal Editors

Multiple sclerosis

Surveillance, Epidemiology, and End Results

Tuberculosis

The Cancer Genome Atlas

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Acknowledgements

The authors would like to thank Ms. Ngaire Pettit-Young, Information First, Sydney, NSW, Australia, for her assistance in developing the search strategy.

This project was supported by the Sydney Vital, Translational Cancer Research, through a Cancer Institute NSW competitive grant. The views expressed herein are those of the authors and are not necessarily those of the Cancer Institute NSW. FB is supported in her academic role by the Friends of the Mater Foundation.

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Hutchings, E., Loomes, M., Butow, P. et al. A systematic literature review of researchers’ and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data. Syst Rev 9 , 240 (2020). https://doi.org/10.1186/s13643-020-01485-5

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A mixed methods systematic literature review of barriers and facilitators to help-seeking among women with stigmatised pelvic health symptoms

• Clare Jouanny   ORCID: orcid.org/0000-0002-4959-5901 1 ,
• Purva Abhyankar   ORCID: orcid.org/0000-0002-0779-6588 2 &
• Margaret Maxwell   ORCID: orcid.org/0000-0003-3318-9500 3  

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Women’s pelvic health is a globally important subject, included in international and United Kingdom health policies, emphasising the importance of improving information and access to pelvic health services. Consequences of pelvic symptoms are intimate, personal, and varied, often causing embarrassment and shame, affecting women’s quality of life and wellbeing.

To understand the experience of seeking healthcare for stigmatised pelvic health symptoms by synthesising all types of published primary research and mapping the results to behavioural theory, to identify potential targets for intervention.

Systematic search of MEDLINE, CINAHL, PsycINFO, SocINDEX, PubMED databases, CDSR and CENTRAL registers, from inception to May 2023 for all types of research capturing women’s views and experiences of seeking help with stigmatised urogenital and bowel symptoms. Studies only reporting prevalence, predictors of help-seeking, non-health related help-seeking, or written in languages other than English, German, French, Spanish and Swedish were excluded. Reference checking and forward citation searching for all included studies was performed. A results-based synthesis approach was used to integrate quantitative and qualitative data. Themes were mapped to the Common-Sense model and Candidacy framework. The Mixed Methods Appraisal Tool was used for critical appraisal. Grading of Recommendations Assessment, Development and Evaluation - Confidence in Evidence from Reviews of Qualitative research for assessing certainty of review findings.

86 studies representing over 20,000 women from 24 high income countries were included. Confidence was high that barriers to help-seeking were similar across all study types and pelvic symptoms: stigma, lack of knowledge, women’s perception that clinicians dismissed their symptoms, and associated normalising and deprioritising of low bother symptoms. Supportive clinicians and increased knowledge were key facilitators.

Conclusions

Using the Common-Sense Model to explore women’s help-seeking behaviour with stigmatised pelvic symptoms reveals problems with cognitive representation of symptom identity, emotional representations of embarrassment and shame, and a subjective norm that women believe their symptoms will be trivialised by clinicians. Together these barriers frustrate women’s identification of their candidacy for healthcare. Addressing these issues through behavioural change interventions for women and clinicians, will help to achieve universal access to pelvic healthcare services (United Nations Sustainable Development Goal 3.7).

Systematic Review Registration

PROSPERO CRD42021256956.

Peer Review reports

Women’s health is finally emerging as a globally important subject. United Nations (UN) Sustainable Development Goals (SDG) 3.7 states we should “by 2030 ensure universal access to sexual and reproductive health care services, including for family planning, information and education, and the integration of reproductive health into national strategies and programmes” [ 1 ]. In the United Kingdom (UK), there is growing emphasis on promoting education on women’s health issues, reducing associated stigma, and increasing access to reliable information about women’s health [ 2 , 3 ].

Many women’s health symptoms are considered difficult to talk about, both by women, health care professionals (clinicians) and the public in general [ 4 , 5 ]. Stigma surrounding pelvic symptoms (including urogynaecological and bowel symptoms) matters because it stops women from seeking help. Symptoms such as urinary incontinence (UI) and prolapse can be addressed through early detection and timely receipt of conservative therapies such as pelvic floor muscle training [ 6 , 7 ]. Although not life threatening, these pelvic symptoms are common: pelvic floor dysfunction (PFD) including urinary and faecal incontinence, bladder, bowel, and sexual dysfunction, prolapse and persistent pelvic pain, is prevalent in up to 50% of women [ 8 ], and has a significant impact on women’s quality of life and physical, mental, and social wellbeing [ 9 , 10 ]. The intimate, personal and varied nature of pelvic symptoms, causes significant embarrassment and shame, leading to further psychological distress, reduced functioning, poor body image and social and occupational difficulties [ 9 , 11 , 12 , 13 , 14 ].

Despite the widespread experience of pelvic symptoms, the number of women who seek healthcare is relatively low, as evidenced by most prevalence data on healthcare seeking related to UI. In a large population from the Nurses’ Health Study I and II, of 94,692 middle aged and older women with UI, only 34% reported discussing their symptoms with a clinician [ 15 ]. Similarly, in a web-based survey of 5,861 Danish women experiencing UI, only 29% had sought professional help [ 16 ]. In the UK, a postal evaluation of 2,414 women registered to a general practice found UI prevalent in 40% but only 17% sought professional help [ 14 ]. More stigmatized pelvic symptoms were included in an online survey of 376 Australian women: 99% had bladder, bowel, sexual dysfunction or prolapse, with 51% seeking help [ 5 ], but in the United States (US), only 29% of 938 women aged 45years or more with accidental bowel leakage sought care [ 17 ]. Two recent systematic literature reviews exploring experiences of prolapse, found that despite the availability of effective early treatment options, women lack knowledge and awareness about symptoms and available treatments [ 10 , 18 ].

It is important to understand the barriers and facilitators women experience when seeking healthcare for stigmatized pelvic symptoms to develop approaches to increase knowledge and awareness among the public and clinicians, to encourage women to seek healthcare when necessary and design or redesign services to meet women’s needs. Literature on barriers and facilitators to help seeking with pelvic symptoms does exist but is spread across different conditions or symptom groups, settings, and populations, and has been generated using different methodologies. To our knowledge, this literature on barriers and facilitators has not been brought together systematically to share learning across different conditions, populations, and methodologies.

This systematic review aimed to identify the barriers and facilitators women in high income countries face in seeking help for stigmatised pelvic symptoms. We used the Common-Sense Model of Self-Regulation of Illness and Behaviour (CSM) [ 19 , 20 , 21 ], a model from health psychology, to synthesise and interpret the review’s findings as it helps explain how people behave (e.g. whether to seek help or not) in reponse to potential health threats (e.g. experience of symptoms or receipt of a diagnosis). The model argues that, on being faced with a possible health threat (such as pelvic symptoms), people are triggered to respond, which takes place in three stages. In Stage 1, people interpret or make sense of the threat in relation to previous experiences and their sociocultural environment, to form beliefs about what condition they have, its likely cause, consequences, duration, and cure/controllability (‘interpretation’). These beliefs are also accompanied by emotional responses to the health threat. In Stage 2, they decide how to cope with the threat (‘coping’), which may include going to a doctor, taking medication, self-care (‘approach coping’) or denial, wishful thinking (‘avoidance coping’). In Stage 3 they assess if their way of coping was effective in returning to a normal state of self (‘appraisal’). The model was recently extended to include people’s beliefs about the behaviour and treatment as determinants of coping procedures and illness outcomes, in addition to illness representations [ 22 ].

The review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA) statement [ 23 ]. PRISMA checklists are available (Additional File 4 ). PROSPERO protocol registration number CRD42021256956.

The SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, Research type) search structure [ 24 ] was chosen as the conceptual framework to specify the review question, develop selection criteria and design search strategy. Although its authors [ 24 ] found that SPIDER was not as sensitive as a traditional PICO [ 25 ], it has been recommended as a systematic and rigorous tool in reviews addressing non-quantitative research questions and offers an optimal balance between sensitivity and specificity in searching [ 26 ] and more easily managed results [ 24 ]. Table  1 shows the framework concepts.

Eligibility criteria

Included pelvic symptoms (Sample) were limited to those likely to affect quality, rather than length, of life. From the literature, pelvic symptoms associated with a degree of stigma in disclosure, and eligible for inclusion in this literature review, were prolapse [ 27 ], urinary and faecal incontinence [ 12 , 28 ], sexual dysfunction, PFD [ 5 ], genital infections such as warts and herpes [ 29 , 30 ], pelvic pain, and abnormal uterine bleeding [ 4 , 31 ]. Some pelvic symptoms arise from issues such as intimate partner violence (IPV), rape, abortion, infertility, female genital mutilation, Human Immunodeficiency Virus/ Acquired Immunodeficiency Syndrome, Human Papilloma Virus, and urogynaecological cancers. These issues were excluded in favour of including the symptoms that may result from them. Table  2 shows the full list.

The Phenomenon of Interest was help-seeking and its alternative terms. Any study design that captured help-seeking views were included. Evaluation included barriers and facilitators that women expressed about seeking help. The ‘research type’ included peer reviewed, published, qualitative, quantitative, or mixed methods primary studies, set in high-income countries only. A summary of eligibility criteria is in Table  3 .

Information sources

Databases were searched using the platform EBSCOhost: MEDLINE, CINAHL complete, PsycINFO, SocINDEX with Full Text; PubMed, and the Cochrane Database of Systematic Reviews (CDSR), Cochrane Central Register of Controlled Trials (CENTRAL); primary studies included in topic relevant systematic reviews; reference list checking of included studies; forward citation searching of included studies in Scopus. Studies were included from year of inception of databases searched, to May 2023.

Search strategy

Scoping searches, MeSH headings used in known relevant studies, thesaurus, and the author’s clinical experience were used to identify subject headings and key words for pelvic symptoms, barriers, and facilitators to seeking healthcare. Peer Review of Electronic Search Strategies (PRESS) checklist [ 32 ] was applied by a medical information specialist. Ethical approval was not sought because this review synthesised results from primary research studies already published. The final search included a combination of terms related to two main concepts: stigmatised pelvic symptoms (Sample) AND help seeking (Phenomenon of Interest). Table  4 shows an example of the search strategy used in MEDLINE. The search strategy was translated by hand for the other databases and registers searched.

Selection process

After removing duplicates, all retrieved studies were screened by title and abstract by two independent reviewers. 10% of full texts were independently dual screened, with substantial agreement (83%; prevalence and bias adjusted kappa [PABAK] 0.66). Study authors were contacted by email where information was unclear or appeared missing, with a response time of three weeks, after which studies were excluded.

Data extraction

A data extraction form designed using Excel, with data items informed by Noyes, Booth [ 33 ] and NICE [ 34 ]. was reviewed and piloted by the research team. Data were extracted by the author, and independently from 33% of included papers by a research assistant. Quantitative data on barriers and facilitators to help-seeking were copied verbatim into the data extraction form and narratively summarised. Qualitative data recording participants’ help seeking views or experiences, found in results or discussion sections, were copied verbatim into NVivo software for analysis.

Quality assessment

The Mixed Methods Appraisal Tool (MMAT) [ 35 ] was used to appraise the methodological quality of each study by the author, and jointly for 33% of studies by a research assistant. The MMAT is pilot tested, interrater reliability tested, and offered five study design categories (one qualitative, three quantitative and one mixed methods) with five core criteria. Information about which areas of a study were problematic are reported, rather than summative scores because this gives more detail.

Data analysis and synthesis

Quantitative data were narratively synthesised, with content analysis of barriers and facilitators, and discussed and agreed with co-authors. Primary qualitative data were extracted and imported into NVivo software, before coding into pre-existing concepts from the analysis of quantitative data, with new concepts added as necessary. Reflecting on patterns and meaning in the data, themes were generated, developed, and reviewed at length through reflective thematic analysis [ 36 ], sense-checked with co-authors, and refined before naming and definition. Quotations from participants were used to illustrate themes. Synthesis of quantitative, qualitative, and mixed methods results drew together themes about barriers and facilitators to healthcare seeking with stigmatised pelvic symptoms, which were mapped to the CSM. Mapping the data to theory helped to explain the relationship of identified themes to help-seeking behaviours and identify potential targets for intervention.

Assessment of confidence in cumulative evidence

Grading of Recommendations Assessment, Development and Evaluation - Confidence in Evidence from Reviews of Qualitative research (GRADE-CERQual) [ 37 ], was used to assess confidence in the findings in terms of methodological limitations, relevance to the review aim, coherence of the review findings in relation to the primary data, and the adequacy of data presented in the primary studies. The Data Richness Scale [ 38 ] was used to assess adequacy of qualitative data.

Reflexivity. The authors have backgrounds in pelvic health physiotherapy, with lived experience (CJ), applied health research (PA, MM), health psychology (PA) and sociology (MM). Before conducting the review, the authors considered their own philosophical positions, context, and life experiences in discussion with each other, to facilitate transparency of relevant preconceptions and beliefs.

Results of search

The electronic search generated 4,527 papers, and reference list checking and forward citation searching found 572 papers. After removal of duplicates, 3,963 titles and abstracts were screened, of which 3,569 were excluded, leaving 394 studies. It was not possible to access 20 papers, and eligibility criteria were not met by 215 papers after full text screening, leaving 159 papers that met all inclusion criteria (53 quantitative, 101 qualitative, 5 mixed methods). Initially, studies were not excluded based on publication year. However, it became apparent that the publication year of included studies ranged from 1988 to 2023, with 48.3% published between 1988 and 2010. This range encompassed a period of significant technological and cultural change, that occurred following the turn of the millennium (e.g., emergence of world wide web). It was speculated whether women’s experiences of barriers and facilitators were the same or had changed due to developments and cultural changes over this period. To test this speculation, data from all quantitative studies were extracted, and content analysis used to code healthcare seeking barriers and facilitators. These were compared across five decades from the 1980s to the present and were found to be similar. This suggested that excluding papers before 2010 was unlikely to miss barriers to healthcare seeking that are currently important to women. Exclusion of 73 studies prior to 2010 led to a total of 86 studies included in this review (33 quantitative, 48 qualitative, and 5 mixed methods). Figure  1 . shows the search results displayed in a PRISMA flow diagram.

Prisma flow diagram

Overview of studies

The main characteristics of quantitative, qualitative, and mixed methods studies are available (Additional File 1 ). Broadly, 36.05% of papers were from Europe, 31.40% from North America, 20.93% from East Asia and Pacific, 6.98% from Middle East and North Africa, 2.33% Worldwide, and 1.16% from Latin America. The geographical representation of all included studies is shown in Table  5 . Participants in all studies were described as ‘women’ or ‘female’: whilst recognising that not everyone with female anatomy identifies as a woman, or female, we have used these terms throughout this paper.

Quantitative studies ( n  = 33) represented 19,185 female participants from nineteen high income countries. All but one study used cross sectional survey design with questionnaires, mostly using unvalidated, bespoke questions on healthcare seeking. Due to heterogeneity of methods, meta-analysis was not possible. One study used a discrete choice experiment to investigate if cost of care and appointment wait time affected healthcare seeking intentions with urinary tract infection (UTI) symptoms [ 76 ]. Stigmatised pelvic symptoms studied included urinary incontinence (18 papers), PFD (five papers), sexual dysfunction (three papers), prolapse (two papers), pelvic pain, urinary tract infection, uro-genital atrophy, constipation, and menstrual dysfunction (one paper each).

Qualitative ( n  = 48) and mixed methods ( n  = 5) studies represented views and experiences of 2,653 women collected through interviews, focus groups, and 216 blog posts, from fifteen high income countries. Only eight papers stated the theoretical framework on which their study was based. Stigmatised pelvic symptoms studied included urinary incontinence (19 papers), PFD (nine papers), prolapse, and pelvic pain (eight papers each), urinary dysfunction, and sexual dysfunction (six papers each), anal incontinence (two papers), and mixed urinary and anal incontinence (two papers).

Quality Assessment

Using the MMAT indicated that 19 of 33 quantitative papers lacked information about representativeness of the sample. Authors were contacted for clarification, with few responses. Ten quantitative papers lacked appropriateness of measures for the healthcare seeking element, possibly because healthcare seeking was often a secondary theme. 28 quantitative papers did not provide any, or enough information on reasons for non-participation, resulting in an uncertain risk of non-response bias. All MMAT criteria were met in 37 of the 48 qualitative papers. In five papers it could not be established if the findings were adequately derived from the data, and in nine papers there was not enough information to determine coherence between data sources, collection, analysis, and interpretation. The interpretation of results was not substantially derived from data in five papers. Data Richness Scale assessments showed 40 qualitative papers had reasonable to good amounts and depth of data. No papers were excluded based on their data richness score. Each theme was assessed for data ‘adequacy’. Most had only minor concerns meaning that there were many studies within a theme, some with only little or superficial data, but some more detailed and specific. Mixed methods papers met all the qualitative methodological quality criteria but there were limitations in quantitative methodological quality in all five studies, and in mixed methods methodological quality in all but one paper. Most frequently this was uncertainty about different components of the study adhering to the quality criteria of each tradition of the methods involved. Quality assessment of all studies using the MMAT is accessible (Additional File 2 ). The CERQual assessment of confidence in the evidence across the key themes was high, with no, or minor concerns about methodological limitations, coherence, relevance, and data adequacy. The results of quality assessment suggest the need for higher quality research in quantitative descriptive studies in this field, particularly to facilitate the assessment of risk of nonresponse bias.

Quantitative studies

The most cited barriers were coded as embarrassment, shame, and taboo, (18 papers) closely followed by participants expressing a lack of knowledge about where to seek healthcare, and about treatment options, with a low expectation of benefit (18 papers). Some participants indicated that they did not recognise their symptoms as a significant medical problem, or thought their symptoms were not troublesome enough to seek healthcare and deprioritised them (19 papers). Many thought their symptoms were normal, especially after childbirth, or with ageing (15 papers). Participants frequently reported that if their clinician asked at all, they were embarrassed, were not interested in, or would not take their pelvic symptoms seriously (14 papers). Others perceived their clinician was too busy and did not want to bother them about pelvic symptoms (5 papers). Fear of being examined, and of required investigations and treatment, were barriers (17 papers), with a few participants being fearful that their symptoms indicated more serious disease (3 papers). Waiting times, inconvenience, being too busy to attend, transport issues, religious, and cultural factors, language difficulties and service issues such as appointment delays, and cost, were all obstacles (21 papers). A less common barrier to seeking healthcare was a desire to cope or self-help (5 papers).

Facilitators for seeking healthcare most often included increased bother from pelvic symptoms (9 papers). Support from family and friends to seek healthcare (4 papers), and knowledge and learning about new treatments encouraged some participants (3 papers), whilst others only sought help due to stigma, embarrassment, self-blame, guilt, or depression about their pelvic symptoms (3 papers) or feared that their symptoms were indicative of serious disease (2 papers). Papers containing the key barriers and facilitators are referenced (Additional File 3 ).

Qualitative and mixed methods studies

Four themes encompassed women’s barriers to healthcare-seeking: (1) Stigma, (2) Women’s lack of knowledge (with three sub-themes of normalising, deprioritising, and fear), (3) Trivialising by clinicians, and (4) Inconvenience and cost of seeking healthcare.

Stigma this theme was a key barrier to help-seeking, encapsulating the frequently used codes, “embarrassing’, “ashamed’, and less often, ‘taboo” (30 papers).

“For me, I was embarrassed to speak to anybody, really, about it, for a long time. But now, I regret that I did that, because I left myself to a bad stage.” [prolapse]; [ 27 ] “You don’t know why, you feel sort of ashamed, you feel embarrassed to talk about it, as if you are somehow a failure, with guilt, you know?” [47 years with UI]; [ 57 ] “Yes. You can talk about almost anything else I think, all kinds of matters considering your genitals and. but not this, this I think is very taboo” [SUI] [ 59 ].

Embarrassment is the emotional impact from stigma, with shame also associated with stigma [ 120 ]. Stigma may be categorised as enacted or felt. Felt stigma may be internalised, perceived, and anticipated [ 121 ]. Internalised stigma was most often described by women seeking help with stigmatised pelvic symptoms, in the way they internalised negative beliefs and perceptions around their symptoms, expressed psychological distress, reduced self-worth, shame, and self-loathing [ 122 ]. Some participants expressed greater embarrassment to talk to a male clinician: “ …My GP is a handsome 40-year-old man, and I would not dream of [laughs] talking to him about anything like that!” [sexual dysfunction] [ 51 ], while others blamed themselves for their symptoms: “ When I was younger, I took a lot of laxatives, so I did this to myself ” [bowel leakage] [ 78 ], or felt self-disgust: “… I feel dirty and disgusted in myself already ” [bowel leakage] [ 115 ].

Lack of knowledge about symptoms in general caused many participants uncertainty over whether to seek healthcare (23 papers):

“You feel disoriented, you don’t know if it is normal or not, whether you should worry or not” [45 years with UI] [ 57 ]. “I did not know that happened to women. I did not know anything about it. I was scared because I didn’t know what it was.” [prolapse] [ 98 ]. “ How can you talk about something [when] you don’t even know what it is?” [bowel leakage] [ 78 ].

Three sub-themes related to ‘lack of knowledge’: normalising, deprioritising, and fear. ‘ Normalising ’: participants normalised pelvic symptoms as women, following childbirth, and with ageing, as something they should not seek medical help for (22 papers):

“I simply thought: the urinary incontinence is just part of it. Your whole body is turned inside out after delivery anyway. So I thought it’s just part of the game.’ ” [PFD] [ 12 ]. “I have some good friends, and my daughter. Well, they have the same problem. It’s age. That’s all we boil it down to is the age. Nothing you can do about it.” [urinary dysfunction] [ 85 ].

‘ Deprioritising ’ was developed from new codes in qualitative data relating to prioritising other things, avoiding, or denying pelvic symptoms, and low bother from symptoms, which was found across all data (19 papers):

“ We forget about ourselves a little. Everybody else comes first, and then later, me.” [PFD] [ 84 ]. Participants across a wide range of pelvic symptoms felt low symptom bother did not justify seeking help: “… it’s only a little bit, not like oh I’ve wet my pants” [urinary dysfunction] [ 47 ] and “ I just forget about it, because it’s not an every week thing.” [bowel leakage] [ 78 ].

‘ Fear ’ related to women’s lack of knowledge and information and included codes about fear of examinations, investigations, and treatments, and inappropriate fear of serious disease, all of which delayed seeking help (8 papers):

“To be exposed, that is something you don’t want to risk, so every time [examination] it is like a mental procedure, the sense of exposure. Well, it’s almost like an abuse, it is something you don’t want to do but you must.” [pelvic pain -endometriosis] [ 61 ]. “ I didn’t want to be put on some pill that would make me more constipated. Sometimes the cure is worse than the disease…” [bowel leakage] [ 78 ]. “ When your uterus or bladder falls, it is very dangerous. You can get cancer ” [PFD] [ 86 ].

‘ Trivialising ’ was a significant theme that grew around codes involving women’s relationship difficulties with their clinician (25 papers). A new code from qualitative data included in this theme was women feeling judged by clinicians if they mentioned pelvic symptoms. Women felt they were not being taken seriously, not being asked about symptoms, and perceived their clinician was embarrassed to discuss symptoms:

“ I told my doctor, I had urine loss all the time…you know what he said? Honestly, I will tell you…”wear a kotex”” [PFD] [ 86 ]. “ You’ve got a rectocele.’ ‘What is it?’ ‘Oh, you don’t need to know.’ Well, hey, if it’s to do with you, you’re the one person who needs to know about it. You shouldn’t be sort of kept like, ‘Oh, you’re a child being a nuisance. Go away. You don’t need to know.” [prolapse] [ 87 ]. “And then she also said that maybe I should learn to live with it, I thought that was a bit crazy. And ehm, that also made me think I did not feel taken seriously. Because I really thought, well, hello, I’m 20!” (22 yrs) [pelvic pain – vulvodynia] [ 52 ]. “The lack of urgency is real with OBGYNs. Maybe younger doctors are more open, but the attitude of older gynaecologists is to do what they did to me. He just gave me a pat on the butt and told me I could live with it.” [prolapse] [ 90 ].

‘Trivialising’ also included women expressing their perception that their clinicians lacked knowledge or training about pelvic symptoms, found in two quantitative and 12 qualitative and mixed methods studies:

“ The GP took me seriously, but in retrospect I think he didn’t have the knowledge…” [pelvic pain – vulvodynia] [ 52 ].

‘Inconvenience and cost of seeking healthcare ’ developed as a theme from overlapping codes in which women described a variety of cultural, gender or religious factors, as well as communication issues with their clinician, long waiting times at appointments making them difficult to fit in to everyday life, and for some, the cost of having to take time away from paid work, or childcare to attend, as barriers to help-seeking (15 papers). Codes around service issues were incorporated: the inconvenience women experienced to physically attend appointments or have treatment, delays in receiving an appointment for a particular service, and the cost of care, especially if they did not have health insurance (12 papers).

Facilitator codes only found in qualitative and mixed methods studies included clinicians taking women seriously, being open to uncertainty, asking about symptoms, and offering support, developing the new theme of ‘supportive clinician attitude’(18 papers), which was added to the themes of worsening symptoms, increasing women’s knowledge, and social support already found in quantitative studies.

Synthesis of all results

Table  6 shows how themes were developed from codes across the data. There was high certainty from the data that barriers and facilitators to healthcare seeking were similar across different stigmatised pelvic symptoms, countries, and research designs.

The extended CSM was applied to better explain these results by describing how women’s perceptions about, and interpretation of their symptoms influence their behaviours in relation to coping with those symptoms. Women’s interpretation of symptoms is influenced by the cognitive and emotional representations triggered by their symptoms, which may be influenced by previous experiences, and sociocultural factors. Accurate cognitive representation of the potential threat from pelvic symptoms requires women to know the identity, cause, consequences, cure/controllability, and likely timeline of their symptoms. Findings from this review suggest that women’s lack of knowledge, reported in 44 studies, and normalising of symptoms, reported in 37 studies, threaten identification of pelvic symptoms. Attribution of cause is threatened by women believing their symptoms are normal. In the early stages, the full consequences of pelvic symptoms may not be appreciated because initially symptoms cause low bother and are deprioritised and normalised. Conversely, some women delay healthcare seeking because they (usually incorrectly) fear serious disease because of their symptoms. Lack of knowledge of treatment options threatens appropriate representation of the timeline and cure/controllability of pelvic symptoms, with some women hoping for spontaneous resolution, whilst others believe their symptoms are incurable. Women’s ability to make sense of their perceptions (coherence) of symptoms is affected by a lack of knowledge, that disrupts women’s cognitive representation of their symptoms.

Women’s main emotional representation of the potential threat from pelvic symptoms is stigma (embarrassment, shame, and taboo). Cited in 52 studies, stigma was the most reported barrier to healthcare seeking, and to a lesser extent, fear: of examination, investigations, treatment, and serious disease.

Women’s treatment beliefs are affected by a lack of knowledge about treatment options, where to seek healthcare, and low expectations of treatment benefit, all delaying healthcare seeking. Women’s beliefs about seeking healthcare are influenced by sociocultural factors (subjective norms, perceived behavioural control), their own, and others’ attitudes. Attitudes of women seen in the data from this literature review indicated that women believed that seeking help for pelvic symptoms would cause them to feel stigmatised, that they would be judged, and their symptoms trivialised by their clinician, and that clinicians would normalise their symptoms, possibly due to a perception that clinicians lacked knowledge and training about pelvic symptoms. Subjective norms define what women believe others would do if they had pelvic symptoms: our data suggest the subjective norms are to normalise and deprioritise their own symptoms, cope, and feel stigmatised. Women’s perceived behavioural control over pelvic symptoms is reduced by lack of knowledge, service issues, and is affected by inappropriate self-help and coping. The key themes from help seeking barriers mapped to the CSM are shown in Fig.  2 .

Using the extended CSM to explain barriers to healthcare seeking with stigmatised pelvic symptoms

In summary, women’s cognitive and emotional representations, treatment beliefs, and beliefs about help-seeking affect their ability to manage their pelvic symptoms. The data show how coping (Stage 2. CSM) is affected by women’s lack of knowledge, causing (mis-)interpretation of their symptoms, and leading them to display either ‘approach-oriented coping’ through inappropriate self-help, such as relying on sanitary pads for incontinence, or ‘avoidant-oriented coping’ procedures such as normalising, and deprioritising symptoms, instead of seeking help. Women appear to become stuck in a maladaptive, distressed loop between the interpretation and coping stages of the CSM, because iterative interpretation of their symptom perceptions, and the social messages they gather about seeking help with pelvic symptoms, reinforce the stigma of, and their lack of knowledge about symptoms. For many women, it was only worsening impact from symptoms and fear of more serious disease that pushed them to seek healthcare. There were a small number of voices (six papers), who believed they should assert themselves to take responsibility to ask for professional help, but the majority of women suggested that a supportive attitude from their clinician, especially to ask women about pelvic symptoms, would facilitate seeking healthcare for stigmatised pelvic symptoms.

This is the first review which covers such a wide range of stigmatised pelvic symptoms, to our knowledge. The principal findings of this mixed methods systematic literature review are that stigma (embarrassment, shame, and taboo), lack of knowledge, and women feeling ‘trivialised’ by clinicians, are definitive barriers to seeking help. Using a health psychology model (CSM) contributed to understanding how the emotional representations (stigma) and cognitive representations (lack of knowledge) particularly affect identification of pelvic symptoms, and clinician behaviour. Referring again to theory, Dixon-Woods, Cavers [ 123 ] described the construct of Candidacy, to explain how, influenced by their context, other people, and sociocultural issues, individuals negotiate their eligibility for healthcare between themselves and healthcare services, in an iterative cycle. When someone seeks healthcare, they assert their candidacy, which is then judged by clinicians (‘Adjudication’), either helping, or hindering their healthcare journey. In the case of seeking help with pelvic symptoms, stigma, women’s lack of knowledge, and their experiences leading to an expectation of their symptoms being trivialised, combine to make women’s candidacy for healthcare unclear. If clinicians lack knowledge and training about pelvic symptoms, they may trivialise, normalise, or judge symptoms, and so adjudicate against women’s healthcare seeking attempts.

‘Unclear candidacy’ is proposed as the overarching theme for this synthesis. The connection between the Candidacy model and the CSM’s illness representations was demonstrated in a paper exploring access to, and experiences of healthcare services [ 124 ]. This connection helps to understand the voices of women seeking help in this analysis: Stigma, lack of knowledge, and feeling trivialised by clinicians were the key factors affecting women’s identification of themselves as candidates for healthcare. Women both judge their own symptoms and feel judged by clinicians as unsuitable, or unworthy, to seek help for stigmatised pelvic symptoms. Women’s beliefs that if they seek healthcare they will not be taken seriously by clinicians, collude to frustrate their candidacy for healthcare. Our data show that women experience felt stigma, and enacted stigma from negative judgements by clinicians, further discriminating against women’s candidacy for healthcare with stigmatised pelvic symptoms. The facilitators that most often prompted women to seek healthcare were more knowledge about pelvic symptoms, worsening symptoms, and feeling that their clinician was supportive, especially in asking specifically about pelvic symptoms. This suggests that women who believe their clinician will have a supportive attitude are more likely to develop a positive emotional representation of their symptoms and will more likely seek healthcare. Increasing women’s knowledge would help them to appropriately identify the cognitive representation of threat posed by their symptoms, to decide if they can appropriately self-manage their symptoms or need to seek professional help.

The strengths of our review are the inclusion of a wide range of carefully considered, stigmatised pelvic symptoms, explored across many high-income countries, with rigorous application of eligibility criteria, and the use of theoretical models to explain the link between barriers and facilitators and help-seeking behaviours, allowing suggestion of possible targets for intervention. Selection bias was reduced by the ability to include studies published in English, German, French, Spanish, and Swedish. Ethnic representation where reported, was mostly white and also included Black, Hispanic and Asian women. The overall CERQual assessments of confidence [ 37 ] were high for the barriers to healthcare seeking found in our review, signifying issues common to women across stigmatised pelvic symptoms. Help-seeking barriers concur with those found in recent systematic literature reviews investigating experiences of individual, stigmatised pelvic symptoms: abnormal uterine bleeding [ 4 ], prolapse [ 10 , 125 ], and a recently published study exploring women’s experiences of PFD [ 93 , 126 ], and urogynaecological care for racial and ethnic minority women [ 127 ]. Stigma, and lack of knowledge were likewise barriers for those with urinary incontinence [ 128 , 129 ]. In a public survey, which was part of a call for evidence to inform the Women’s Health Strategy for England [ 130 ], published after commencement of this review, 84% of respondents said they had not been listened to by healthcare clinicians, which concurs with our findings, although not specific to pelvic health. Our finding that women perceived clinicians lacked knowledge and training (cited in 12 qualitative and mixed methods studies) was only found in one recent review relating to prolapse [ 10 ]. Our finding of women’s perception that clinicians normalise their pelvic symptoms (cited in seven qualitative and mixed methods studies), was only found in one review about abnormal uterine bleeding [ 4 ]. Few facilitators to healthcare seeking were reported in other reviews. Increased knowledge, social support and worsening symptoms were similarly found to encourage women to seek healthcare with PFD [ 10 , 127 , 131 ]. In contrast to others’ results, we found a large volume of qualitative data expressing the importance of a supportive clinician to facilitate women’s healthcare-seeking for pelvic symptoms. This may be due to the large number of women’s voices represented over a wide range of pelvic symptoms. It is likely to be an important consideration in developing future interventions.

We recognise limitations in this review. Although our search included many stigmatised pelvic symptoms, some relevant publications may have been missed, and not all symptoms were represented in the included literature. Grey literature was not investigated because we chose to include only peer reviewed studies to ensure a degree of rigour, and due to resource restrictions. Only women living in high income countries were included, to allow better understanding of barriers and facilitators in countries with similar economies to the UK, whilst recognising that the UK National Health Service is unique. Excluding studies published before 2010 is mitigated by thorough content analysis of the data in all quantitative studies concerning barriers and facilitators prior to exclusion, confirming that issues that currently concern women were unlikely to be missed. Quality appraisal using the MMAT was challenging because non-response bias was unclear in many quantitative studies, there was insufficient focus on healthcare seeking in ten papers, and few contacted authors responded to requests for clarification. Most included studies only captured the voices of women already seeking healthcare with symptoms: taking a public health approach to seek the concerns of all women may uncover further barriers and facilitators to seeking help for stigmatised pelvic symptoms not found in this review.

The findings of this review mean that efforts to encourage women to seek healthcare with pelvic symptoms need to target the barriers by reducing stigma, increasing knowledge, and supporting primary care clinicians to routinely discuss stigmatised pelvic symptoms with women. Changing the social norm so women believe they will be taken seriously if they seek healthcare is likely to empower them to appropriately manage their symptoms. Since this review began, there has been an explosion of interest and information about menopause, with celebrity endorsement in the UK [ 132 ], which along with the first ever UK Government Women’s Health Strategy [ 130 ], may help to normalise discussion of stigmatised pelvic health symptoms, reducing stigma. Clinicians at all levels, particularly in primary care, need to legitimise women’s candidacy for pelvic healthcare. This may require clinician education and training to better understand the significant effects of pelvic symptoms on women’s quality of life and wellbeing, to confidently educate women about their anatomy, their symptoms, and how to negotiate the healthcare system. Evidence informed, local pathways of care should be available and widely recognised to enable women to self-manage symptoms, when possible, to know when and where to seek help, and to expect to be supported by clinicians throughout their journey, with timely referral to specialist multidisciplinary services when required.

There are unanswered questions about facilitating early help-seeking in women with stigmatised pelvic symptoms: A few interventions have successfully increased pelvic health knowledge for a short duration [ 133 , 134 , 135 , 136 ], probably by improving cognitive representations of illness identity, but there is a lack of research targeting emotional representations to reduce the stigma of pelvic symptoms. Results from this systematic, mixed methods literature review suggest that changing stigma, knowledge, and beliefs about seeking help for pelvic symptoms will support women to identify their candidacy for healthcare, reduce normalising and deprioritising of symptoms, inappropriate self-help, and incorrect adjudication by clinicians who normalise and trivialise women’s pelvic symptoms. Future research needs to explore whether targeting both cognitive and emotional representations towards stigmatised pelvic symptoms, and the attitudes and norms women encounter, can encourage women to seek healthcare sooner. A successful intervention to raise awareness, reduce stigma and encourage women with stigmatised pelvic symptoms to seek timely healthcare could be used to better inform public health policy, reduce unnecessary surgical costs, and work towards meeting the United Nations Sustainable Development Goals core target 3.7 by 2030 [ 1 ].

Abbreviations

Cochrane Database of Systematic Reviews

Cochrane Central Register of Controlled Trials

Common-Sense Model of Self-Regulation of Illness and Behaviour

Female Genital Mutilation

Grading of Recommendations Assessment, Development and Evaluation - Confidence in Evidence from Reviews of Qualitative research

Human Immunodeficiency Virus/ Acquired Immunodeficiency Syndrome

Human Papilloma Virus

Mixed Methods Appraisal Tool

Prevalence And Bias Adjusted Kappa

Pelvic Floor Dysfunction

Peer Review of Electronic Search Strategies

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

Sustainable Development Goals

Sample, Phenomenon of Interest, Design, Evaluation, Research type, search structure

Urinary Incontinence

United Kingdom

United Nations

United States

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Jouanny, C., Abhyankar, P. & Maxwell, M. A mixed methods systematic literature review of barriers and facilitators to help-seeking among women with stigmatised pelvic health symptoms. BMC Women's Health 24 , 217 (2024). https://doi.org/10.1186/s12905-024-03063-6

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BENEFITS OF PALLIATIVE CARE IN ADULTS WITH A DIAGNOSIS OF HEART FAILURE: AN EXPLORATORY LITERATURE REVIEW

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Introduction Heart Failure is a clinical syndrome characterized by a series of symptoms such as dyspnea, orthopnea and edema in the lower limbs. This pathology continues to have a high prevalence despite advances in pharmacotherapy and device therapy and given that it is a pathology that significantly impairs the quality of life of patients, the implementation of care is of vital importance. However, these are underused due to lack of knowledge on the part of health personnel and also due to poor implementation in the different health providers.

Objective An exploratory review of the literature was carried out regarding the benefits of palliative care in patients with advanced heart failure, in order to synthesize the available and updated evidence.

Methodology Searched for articles published from 2017 to 2022 related to palliative care in patients with heart failure and using the PRISMA 2020 methodology for this study. This inquiry of articles was carried out in the following databases: UpToDate, PubMed, MESH, PMC (US National Library of Medicine National Institutes of health).

Results A total of 5 articles were obtained, from which they concluded that palliative care has a positive impact on the quality of life of patients with heart failure, there was a lower rate of hospital readmissions, improvements in physical, psychological and existential.

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Infection may play an important role in the pathogenesis of alveolar osteonecrosis following facial herpes zoster: a case report and literature review

• Kaikai Huang 1 ,
• Youyuan Wang 2 ,
• Yuhua Huang 1 ,
• Shanshan Han 1 ,
• Yu Yang 1 ,
• Pinghua Qu 1 ,
• Baoying Liang 1 ,
• Qingyu Zhen 1 ,
• Wenting Chen 3 &
• Ying Lin 1  

BMC Oral Health volume  24 , Article number:  409 ( 2024 ) Cite this article

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Herpes zoster (HZ) is one of the most common skin diseases caused by viruses. Facial HZ develops when the varicella-zoster virus affects the trigeminal nerve, and alveolar osteonecrosis is a rare complication. However, the exact pathogenesis of postherpetic alveolar osteonecrosis remains unclear.

Case description

We encountered a patient who presented to the dermatology clinic with facial HZ and tooth exfoliation in the upper right jaw, and panoramic radiography revealed decreased bone density and poor alveolar socket healing in his right maxilla. Biopsy of the alveolar process revealed fragments of nonvital lamellar bone, which were devoid of osteoblasts and osteocytes and were surrounded by numerous neutrophils and bacterial aggregates. Thus, the diagnosis of alveolar osteonecrosis following facial HZ was confirmed. He then underwent resection of the osteonecrotic tissue. The pathological findings of postoperative tissue were similar to those of previous biopsies. Varicella-zoster virus and multiple types of bacteria were detected through next-generation sequencing, and the species of bacteria were consistent with the results of bacterial culture. Antibiotics and valaciclovir were administered during the perioperative period. The patient showed good recovery at the 9-month follow-up.

Conclusions

The coexistence of bacterial and viral infection may play an important role in the pathogenesis of alveolar osteonecrosis following HZ. To our knowledge, we are the first to directly explore microbial pathogens in a case of postherpetic alveolar osteonecrosis through next-generation sequencing and bacterial culture. We recommend that oral examinations be carefully conducted for patients who are diagnosed with facial HZ, even if their facial rashes have faded away. We suggest that a prolonged and full-dose antiviral therapy course may be beneficial for the treatment of facial HZ with intraoral lesions. The implementation of dental preventive measures should be considered for patients with facial HZ. The application of antibiotics and excision of necrotic bone may reduce the abundance of bacteria in lesions and improve wound healing.

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Herpes zoster (HZ) is one of the most common skin diseases caused by viruses, and up to one-third of humans may be affected during their lives [ 1 ]. Facial HZ develops when varicella-zoster virus (VZV) affects the trigeminal nerve [ 2 ]. Herpetic neuralgia and Ramsay Hunt syndrome are well-known complications of facial HZ [ 2 , 3 ]. Another rare, severe complication is alveolar osteonecrosis, which can be easily overlooked, as it may occur long after the onset of HZ [ 4 ]. Only 46 such cases had been reported as of 2014 [ 4 ].

Alveolar osteonecrosis is a severe bone disease (osteonecrosis) that affects the jaws (the maxilla and the mandible). The definitive diagnosis of alveolar osteonecrosis depends on the pathological characteristics of osteonecrosis. Alveolar osteonecrosis is usually considered related to certain kinds of drugs (medication-related osteonecrosis of the jaws (MRONJ) due to antiangiogenic agents or antiresorptive drugs such as bisphosphonates and denosumab), radiotherapy (osteoradionecrosis), bacterial infection (osteomyelitis) and metastatic jaw disease [ 5 , 6 , 7 ]. However, the exact pathogenesis of postherpetic alveolar osteonecrosis remains unclear.

Herein, we report the case of a patient with HZ and ipsilateral tooth exfoliation who was later diagnosed with alveolar osteonecrosis. We demonstrate the important role of infection in the pathogenesis of alveolar osteonecrosis through pathological characteristics, next-generation sequencing (NGS) and bacterial culture.

Case presentation

A 67-year-old man presented to the dermatology clinic of the Second Affiliated Hospital of Guangzhou University of Chinese Medicine with a 5-week history of erythema and clustered blisters accompanied by great pain in the right face. He had a severe toothache in the upper right jaw, visited the stomatologist in a local hospital 4 weeks prior and was diagnosed with acute periodontitis and HZ. He was prescribed intravenous ceftizoxime 1 g/d and metronidazole 0.5 g/d, as well as oral acetaminophen for 2 weeks. However, the rashes on his face worsened, and he was subsequently referred to the dermatology clinic in the local hospital. A 10-day regimen of oral valacyclovir 1 g twice a day was initiated. However, the patient’s intense pain was not relieved and four teeth of his upper right jaw exfoliated in succession 10 days before he visited our clinic.

The patient had a 30-year on-and-off history of toothache. He saw the stomatologist and took painkillers at the very beginning. Then, he took metamizole sodium and phenylbutazone tablets every time the toothache attacked, and he hardly went to the hospital to receive standardized treatment, even when he lost several molar teeth many years earlier. The patient also had a history of hypertension and infection with hepatitis B virus (HBV) for years. He had no previous history of tumors, local radiotherapy or other therapy with antiangiogenic agents or antiresorptive drugs such as bisphosphonates and denosumab.

Extraoral examination revealed pigmentation and scars on the right half of the face (Fig.  1 a). On intraoral examination, it was found that there was a complete loss of crowns from teeth 11 to 17 and 35; there was also some tooth decay, gingival recession, and exposure of the alveolar process in the first quadrant of the maxillary arch extending from teeth 11 to 14 (Fig.  1 b). Residual roots of teeth 14, 36 and 48 were also observed.

Clinical findings. ( a ) Pigmentation and scars on the right face after herpes zoster. ( b ) Tooth exfoliation, gingival recession, and exposure of the alveolar process in the first quadrant of the maxillary arch extending from tooth 11 to 14. ( c ) Extensive osteonecrosis was excised during debridement. ( d ) Granulation tissue formation was observed three weeks after debridement

Laboratory tests yielded the following results: normal coagulation function, blood glucose, routine urine tests, routine stool tests, electrocardiography and chest radiography. The screening result for human immunodeficiency virus (HIV) antibody was negative. Quantitative analysis of HBV DNA yielded a value of 4.18 × 10 5 IU/mL. Routine blood examination revealed an elevated white blood cell count of 10.84 × 10 9 /L. CRP was 20.8 mg/L. ALT and serum creatinine were slightly elevated at 54 U/L and 138 µmol/L, respectively. Color ultrasonography showed multiple hepatic cysts and renal cysts. Panoramic radiography was conducted 10 days after tooth exfoliation and revealed decreased bone density and poor alveolar socket healing in his right maxilla. Decayed teeth, residual roots of teeth and periapical cysts were found (Fig.  2 a). Computed tomography examination revealed empty tooth sockets on the right side of the maxilla (Fig.  2 b).

Imaging manifestations. ( a ) Panoramic radiography showed decreased bone density and poor alveolar socket healing in the right maxilla. Decayed teeth (red arrowhead), residual roots of teeth (yellow arrowhead) and periapical cysts (green arrowhead) were found. ( b ) Computed tomography examination revealed empty tooth sockets (white arrowhead) on the right side of the maxilla

Biopsy was conducted from a piece of alveolar process and adjacent mucous membrane. Hyperplasia of the squamous epithelium with no atypia was observed in the oral mucosa. Fibrinoid necrosis of some vascular walls, lumen occlusion, and infiltration of histiocytes and neutrophils were found beneath the mucosa (Fig.  3 a). There were also some fragments of nonvital lamellar bone, which were devoid of osteoblasts and osteocytes and were surrounded by numerous neutrophils and bacterial aggregates (Fig.  3 b). Thus, the diagnosis of alveolar osteonecrosis following facial HZ was confirmed.

The patient was then transferred to the Department of Oral and Maxillofacial Surgery in Sun Yat-sen Memorial Hospital for resection of the osteonecrotic tissue. Extensive malodorous osteonecrosis was observed in the right maxilla during debridement (Fig.  1 c). The pathological findings of postoperative tissue were similar to those of previous biopsies (Fig.  3 c). Bacterial aggregates could be seen inside the marrow cavity by Periodic Acid-Schiff staining (Fig.  3 d).

Histological findings. ( a ) The biopsy of the mucous membrane adjacent to the alveolar process revealed infiltration of histiocytes and neutrophils beneath the mucosa. The arrowhead indicates lumen occlusion (Haematoxylin and Eosin ×200). ( b ) The biopsy of the alveolar process showed fragments of nonvital lamellar bone (green arrowhead), which were devoid of osteoblasts and osteocytes and were surrounded by numerous neutrophils (black arrowhead) and bacterial aggregates (yellow arrowhead) (Haematoxylin and Eosin ×200). ( c ) The pathological findings of postoperative tissue were similar to those of previous biopsies, and osteonecrosis (green arrowhead), numerous neutrophils (black arrowhead) and bacterial aggregates (yellow arrowhead) were observed (Haematoxylin and Eosin ×200). ( d ) Arrowheads indicate bacterial aggregates inside the marrow cavity (Periodic Acid-Schiff staining ×100)

A necrotic bone tissue sample was taken for bacterial culture under aerobic and anaerobic conditions. Prevotella denticola , Streptococcus intermedius , Actinomycetes oris , and Actinomyces viscosus were then confirmed by matrix-assisted laser desorption/ionization time-of-flight mass spectrometry. Moreover, NGS was conducted from a piece of alveolar process and adjacent mucous membrane. Following DNA extraction, DNA libraries were constructed and sequenced by the MGISEQ-2000 platform [ 8 ]. High-quality sequencing data were generated by removing low-quality reads, followed by computational subtraction of human host sequences mapped to the human reference genome (hg19) using Burrows‒Wheeler Alignment [ 9 ]. The remaining data obtained by removal of low-complexity reads were classified by simultaneous alignment to the Pathogens Metagenomics Database (PMDB), consisting of bacteria, fungi, viruses and parasites. Finally, Prevotella, Streptococcus, Lactobacillus, Veillonella, Actinomyces, Candida , VZV, HBV, human gammaherpesvirus 4 and Torque teno virus (TTV) were detected by NGS. Thus, the coexistence of bacterial and viral infection was confirmed.

During the perioperative period, a 7-day regimen of antiviral treatment (oral valacyclovir 1 g twice a day) and antibiotic therapy (intravenous cefathiamidine 2 g twice a day for 3 days and oral cefuroxime 0.25 g twice a day for 4 days successively) were administered. Granulation tissue formation was observed on the surface of the alveolar wound three weeks after debridement (Fig.  1 d). At a follow-up 9 months later, no further tooth exfoliation was found.

Discussion and conclusions

Although there was no apparent osteonecrosis of the jaw according to panoramic radiographs or CT scans, biopsy of the alveolar process revealed the typical pathological characteristics of osteonecrosis. Thus, the diagnosis of alveolar osteonecrosis following facial HZ can be confirmed before surgery. Alveolar osteonecrosis may appear 9 to 150 days after the onset of facial HZ [ 10 ], and tooth exfoliation is one of its most important clinical manifestations [ 11 , 12 ]. This phenomenon could hardly be explained by coincidence, as reported cases of tooth exfoliation have always occurred on the same side as facial HZ [ 4 ]. There must be some underlying factors associated with facial HZ with alveolar osteonecrosis.

MRONJ and osteoradionecrosis could be ruled out in the present case, as the patient did not have a related history. Histological findings did not support metastatic jaw diseases. Some scholars believe that local vasculitis caused by viruses [ 13 ], vasoconstriction through sympathetic innervation [ 14 ], mechanical compression of the alveolar artery by the swollen alveolar nerve [ 10 ], or a hypercoagulable state may be involved in the pathogenesis of postherpetic alveolar osteonecrosis. In our case, the pathological findings of fibrinoid necrosis on the vascular wall and lumen occlusion may support the hypothesis that vascular factors also partially contributed to postherpetic alveolar osteonecrosis.

Notably, the patient had a long-term history of toothache but did not receive standard treatment. Decayed teeth, residual roots of teeth and periapical cysts indicated poor oral hygiene and chronic oral diseases with possible bacterial colonization of the patient. Four teeth of his upper right jaw exfoliated successively after the onset of ipsilateral facial HZ, and interestingly, the adjacent teeth of the upper left jaw seemed not to be affected. An immunosuppressive state, absence of early standardized antiviral treatment, underlying diseases such as tumors, tuberculosis, HIV or HBV infection, and advanced age are considered risk factors for alveolar osteonecrosis in patients with facial HZ involving the maxillary and/or mandibular branch of the trigeminal nerve [ 11 , 12 , 14 , 15 ]. Ipsilateral lesions on the buccal mucosa, labial mucosa, tongue, alveolar ridge and soft palate can be affected in facial HZ cases [ 16 ]. A subsequent serious bacterial infection, such as septicemia, may occur following HZ [ 17 ]. It has been reported that existing periodontitis or pulpitis may lead to more severe alveolar osteonecrosis [ 9 ]. Thus, it is reasonable to infer that VZV infection may lead to severe damage to the oral mucosa, which aggravates chronic oral diseases and facilitates bacterial infection.

In view of the lack of in-depth discussion about infection in the previous literature, we attempted to apply comprehensive techniques to analyze the pathogens of postherpetic alveolar osteonecrosis, including bacterial culture, NGS sequencing and histopathological examination. To our knowledge, we are the first to directly explore microbial pathogens in cases of postherpetic alveolar osteonecrosis through NGS sequencing and bacterial culture. The poor oral hygiene, bacterial aggregates observed in the bone marrow cavity of the necrotic bone upon histopathological examination, VZV and multiple types of bacteria detected through NGS sequencing which were consistent with the results of bacterial culture, strongly indicated that the coexistence of bacterial and viral infection may play an important role in the pathogenesis of alveolar osteonecrosis following HZ.

On the other hand, chronic oral diseases may lead to localized immunosuppression, which possibly increases the risk of VZV reactivation. The role of local factors in the outbreak of HZ has been discussed in some studies. It has been reported that HZ can occur in affected sites after local radiotherapy, intra-articular corticosteroid injection and surgical operations [ 18 , 19 , 20 , 21 ]. The risk of developing HZ in breast cancer patients who have received postoperative radiotherapy may be 3- to 5-fold higher than the incidence in the general population [ 21 ]. Obviously, the patient in this case had chronic oral diseases before HZ onset. However, whether preexisting chronic oral diseases may increase the risk of developing HZ remains to be verified by studies on a large sample of patients.

Besides VZV, we should notice that some other viruses such as HBV, human gammaherpesvirus 4 and TTV were also detected by NGS. High levels of HBV have been confirmed in the blood by quantitative analysis as the case description above. HBV can cause hepatitis, fibrosis, cirrhosis, hepatocellular carcinoma and liver failure [ 22 ]. Human gammaherpesvirus 4 , also known as Epstein-Barr virus (EBV), infects more than 95% of the world’s population and is associated with some kinds of lymphoma, nasopharyngeal carcinoma and infectious mononucleosis [ 23 ]. EBV establishes a life-long persistence in the human host by infecting B cells, and the cycling of latency and reactivation is ongoing in all infected individuals [ 23 ]. TTV DNAemia is universal among the global population and there is now a widespread consensus that TTV should be considered a commensal because no evidence supports a causal association with any human disease [ 24 ]. It was unavoidable that the local tissue taken for NGS examination in our case would contain a small amount of blood. Thus, it was reasonable to infer that the HBV, EBV and TTV we detected by NGS originated from the blood. To our knowledge, there are currently no studies reporting the pathogenesis of HBV, EBV and TTV in alveolar osteonecrosis. On the other hand, VZV establishes latency in the cell bodies of axons after primary infection [ 25 ]. When reactivated, VZV travels within the axon in anterograde manner to reach the innervated skin and mucous membrane where it causes HZ, characterized by a localized painful vesicular rash [ 25 ]. Thus, only when VZV is reactivated can it be detected in local tissue. In addition, postherpetic alveolar osteonecrosis always occurs at the same innervated part of HZ [ 4 ]. Therefore, it is reasonable to infer that the VZV we detected in local tissue by NGS is involved in the pathogenesis of postherpetic alveolar osteonecrosis.

Based on the pathogenesis of the disease we discussed above, we recommend that oral examinations be carefully conducted for patients who are diagnosed with facial HZ, even if their facial rashes have faded away. In particular, patients may be first seen in the dermatology department, and they should be referred to the stomatology department for consultation and evaluation.

Early antiviral treatment is important for HZ. The course of antiviral treatment is usually 7 days [ 26 ]. In patients who continue to develop new vesicles or who have cutaneous, ocular, neurologic, or motor complications after 7 days of antiviral therapy, extending the duration of antiviral therapy for more than 7 days is recommended [ 26 ]. However, there is not yet a guideline regarding the recommended antiviral therapy course for the treatment of facial HZ with intraoral lesions. The NGS results of the abovementioned patient demonstrated the existence of VZV in oral lesions at 5 weeks after the onset of HZ. Thus, we suggest that a prolonged and full-dose antiviral therapy course may be beneficial for the treatment of facial HZ with intraoral lesions, especially when the intraoral mucosa has not recovered after a conventional 7-day therapy course.

In considering prevention, we can refer to MRONJ, as bacterial infection (mainly with actinomycetes) is believed to play an important role in MRONJ [ 12 , 27 ]. The implementation of dental preventive measures in solid tumor patients with bone metastases treated with bisphosphonates may help to decrease the occurrence of MRONJ from 3.2 to 1.3% [ 28 ]. We should also strengthen oral health education and nursing practices regarding facial HZ. The application of early antiviral treatment and antibiotics and the excision of necrotic bone would help to improve wound healing to the greatest extent [ 29 ]. The bacteria most frequently associated with MRONJ are Streptococcus species (spp.), Prevotella spp., Actinomyces spp., Veillonella spp., and Parvimonas micra [ 30 ]. The bacteria are most susceptible to the cephalosporins cefotaxime, cefuroxime and β-lactam antibiotics with β-lactamase inhibitors [ 30 ]. The pathogenic agents we detected in this case of postherpetic alveolar osteonecrosis were in accordance with MRONJ, indicating that it was reasonable to choose antibiotics for postherpetic alveolar osteonecrosis according to MRONJ.

The removal of necrotic bone may reduce the abundance of bacteria in lesions, especially in deep tissue [ 30 ]. In some previous cases of postherpetic alveolar osteonecrosis, the patient underwent more than one operation [ 2 , 31 ]. Clinicians should attach importance to timely debridement; this was also a key experience in our successful treatment of this patient.

In conclusion, alveolar osteonecrosis is a rare, severe complication of HZ and may occur long after the onset of HZ. Tooth exfoliation is a sign of alveolar osteonecrosis. We have been the first to directly explore the microbial pathogens in a case of postherpetic alveolar osteonecrosis through NGS sequencing and bacterial culture. We suggest that the coexistence of bacterial and viral infection may play an important role in the pathogenesis of alveolar osteonecrosis following HZ.

Data availability

All data underlying the findings and outcome are presented as part of the article and no supplementary source data are required.

Abbreviations

• Herpes zoster

Next-generation sequencing

Hepatitis B virus

Human immunodeficiency virus

Varicella-zoster virus

Epstein-Barr virus

Torque teno virus

Medication-related osteonecrosis of the jaw

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Acknowledgements

We thank Dr. Zhexun Huang from Department of implantation, Stomatological Hospital, School of Stomatology, Southern Medical University for professional advice on discussion in this case.

This work was supported by National Natural Science Foundation of China (No.31972856), Top Talents Project of Guangdong Provincial Hospital of Chinese Medicine (No.BJ2022YL08) and Chinese Medicine Science and Technology Research Project of Guangdong Provincial Hospital of Chinese Medicine (No.YN2022QN25).

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Kaikai Huang, Yuhua Huang, Shanshan Han, Yu Yang, Pinghua Qu, Baoying Liang, Qingyu Zhen & Ying Lin

Department of Oral and Maxillofacial Surgery, Sun Yat-sen Memorial Hospital, Sun Yat-sen University, Guangzhou, 510000, China

Youyuan Wang

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KH and YL were responsible for writing and revision of the manuscript. KH, YW and YH contributed to the oral examination and treatment of the patient. SH, BL, YY and PQ were responsible for collecting clinical and laboratory data. WC and QZ were responsible for literature review. All authors have read and agreed to the published version of the manuscript.

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Huang, K., Wang, Y., Huang, Y. et al. Infection may play an important role in the pathogenesis of alveolar osteonecrosis following facial herpes zoster: a case report and literature review. BMC Oral Health 24 , 409 (2024). https://doi.org/10.1186/s12903-024-04202-z

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Examining the role of community resilience and social capital on mental health in public health emergency and disaster response: a scoping review

• C. E. Hall 1 , 2 ,
• H. Wehling 1 ,
• J. Stansfield 3 ,
• J. South 3 ,
• S. K. Brooks 2 ,
• N. Greenberg 2 , 4 ,
• R. Amlôt 1 &
• D. Weston 1  

BMC Public Health volume  23 , Article number:  2482 ( 2023 ) Cite this article

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The ability of the public to remain psychologically resilient in the face of public health emergencies and disasters (such as the COVID-19 pandemic) is a key factor in the effectiveness of a national response to such events. Community resilience and social capital are often perceived as beneficial and ensuring that a community is socially and psychologically resilient may aid emergency response and recovery. This review presents a synthesis of literature which answers the following research questions: How are community resilience and social capital quantified in research?; What is the impact of community resilience on mental wellbeing?; What is the impact of infectious disease outbreaks, disasters and emergencies on community resilience and social capital?; and, What types of interventions enhance community resilience and social capital?

A scoping review procedure was followed. Searches were run across Medline, PsycInfo, and EMBASE, with search terms covering both community resilience and social capital, public health emergencies, and mental health. 26 papers met the inclusion criteria.

The majority of retained papers originated in the USA, used a survey methodology to collect data, and involved a natural disaster. There was no common method for measuring community resilience or social capital. The association between community resilience and social capital with mental health was regarded as positive in most cases. However, we found that community resilience, and social capital, were initially negatively impacted by public health emergencies and enhanced by social group activities.

Several key recommendations are proposed based on the outcomes from the review, which include: the need for a standardised and validated approach to measuring both community resilience and social capital; that there should be enhanced effort to improve preparedness to public health emergencies in communities by gauging current levels of community resilience and social capital; that community resilience and social capital should be bolstered if areas are at risk of disasters or public health emergencies; the need to ensure that suitable short-term support is provided to communities with high resilience in the immediate aftermath of a public health emergency or disaster; the importance of conducting robust evaluation of community resilience initiatives deployed during the COVID-19 pandemic.

Peer Review reports

For the general population, public health emergencies and disasters (e.g., natural disasters; infectious disease outbreaks; Chemical, Biological, Radiological or Nuclear incidents) can give rise to a plethora of negative outcomes relating to both health (e.g. increased mental health problems [ 1 , 2 , 3 , 4 ]) and the economy (e.g., increased unemployment and decreased levels of tourism [ 4 , 5 , 6 ]). COVID-19 is a current, and ongoing, example of a public health emergency which has affected over 421 million individuals worldwide [ 7 ]. The long term implications of COVID-19 are not yet known, but there are likely to be repercussions for physical health, mental health, and other non-health related outcomes for a substantial time to come [ 8 , 9 ]. As a result, it is critical to establish methods which may inform approaches to alleviate the longer-term negative consequences that are likely to emerge in the aftermath of both COVID-19 and any future public health emergency.

The definition of resilience often differs within the literature, but ultimately resilience is considered a dynamic process of adaptation. It is related to processes and capabilities at the individual, community and system level that result in good health and social outcomes, in spite of negative events, serious threats and hazards [ 10 ]. Furthermore, Ziglio [ 10 ] refers to four key types of resilience capacity: adaptive, the ability to withstand and adjust to unfavourable conditions and shocks; absorptive, the ability to withstand but also to recover and manage using available assets and skills; anticipatory, the ability to predict and minimize vulnerability; and transformative, transformative change so that systems better cope with new conditions.

There is no one settled definition of community resilience (CR). However, it generally relates to the ability of a community to withstand, adapt and permit growth in adverse circumstances due to social structures, networks and interdependencies within the community [ 11 ]. Social capital (SC) is considered a major determinant of CR [ 12 , 13 ], and reflects strength of a social network, community reciprocity, and trust in people and institutions [ 14 ]. These aspects of community are usually conceptualised primarily as protective factors that enable communities to cope and adapt collectively to threats. SC is often broken down into further categories [ 15 ], for example: cognitive SC (i.e. perceptions of community relations, such as trust, mutual help and attachment) and structural SC (i.e. what actually happens within the community, such as participation, socialising) [ 16 ]; or, bonding SC (i.e. connections among individuals who are emotionally close, and result in bonds to a particular group [ 17 ]) and bridging SC (i.e. acquaintances or individuals loosely connected that span different social groups [ 18 ]). Generally, CR is perceived to be primarily beneficial for multiple reasons (e.g. increased social support [ 18 , 19 ], protection of mental health [ 20 , 21 ]), and strengthening community resilience is a stated health goal of the World Health Organisation [ 22 ] when aiming to alleviate health inequalities and protect wellbeing. This is also reflected by organisations such as Public Health England (now split into the UK Health Security Agency and the Office for Health Improvement and Disparities) [ 23 ] and more recently, CR has been targeted through the endorsement of Community Champions (who are volunteers trained to support and to help improve health and wellbeing. Community Champions also reflect their local communities in terms of population demographics for example age, ethnicity and gender) as part of the COVID-19 response in the UK (e.g. [ 24 , 25 ]).

Despite the vested interest in bolstering communities, the research base establishing: how to understand and measure CR and SC; the effect of CR and SC, both during and following a public health emergency (such as the COVID-19 pandemic); and which types of CR or SC are the most effective to engage, is relatively small. Given the importance of ensuring resilience against, and swift recovery from, public health emergencies, it is critically important to establish and understand the evidence base for these approaches. As a result, the current review sought to answer the following research questions: (1) How are CR and SC quantified in research?; (2) What is the impact of community resilience on mental wellbeing?; (3) What is the impact of infectious disease outbreaks, disasters and emergencies on community resilience and social capital?; and, (4) What types of interventions enhance community resilience and social capital?

By collating research in order to answer these research questions, the authors have been able to propose several key recommendations that could be used to both enhance and evaluate CR and SC effectively to facilitate the long-term recovery from COVID-19, and also to inform the use of CR and SC in any future public health disasters and emergencies.

A scoping review methodology was followed due to the ease of summarising literature on a given topic for policy makers and practitioners [ 26 ], and is detailed in the following sections.

Identification of relevant studies

An initial search strategy was developed by authors CH and DW and included terms which related to: CR and SC, given the absence of a consistent definition of CR, and the link between CR and SC, the review focuses on both CR and SC to identify as much relevant literature as possible (adapted for purpose from Annex 1: [ 27 ], as well as through consultation with review commissioners); public health emergencies and disasters [ 28 , 29 , 30 , 31 ], and psychological wellbeing and recovery (derived a priori from literature). To ensure a focus on both public health and psychological research, the final search was carried across Medline, PsycInfo, and EMBASE using OVID. The final search took place on the 18th of May 2020, the search strategy used for all three databases can be found in Supplementary file 1 .

Selection criteria

The inclusion and exclusion criteria were developed alongside the search strategy. Initially the criteria were relatively inclusive and were subject to iterative development to reflect the authors’ familiarisation with the literature. For example, the decision was taken to exclude research which focused exclusively on social support and did not mention communities as an initial title/abstract search suggested that the majority of this literature did not meet the requirements of our research question.

The full and final inclusion and exclusion criteria used can be found in Supplementary file 2 . In summary, authors decided to focus on the general population (i.e., non-specialist, e.g. non-healthcare worker or government official) to allow the review to remain community focused. The research must also have assessed the impact of CR and/or SC on mental health and wellbeing, resilience, and recovery during and following public health emergencies and infectious disease outbreaks which affect communities (to ensure the research is relevant to the review aims), have conducted primary research, and have a full text available or provided by the first author when contacted.

Charting the data

All papers were first title and abstract screened by CH or DW. Papers then were full text reviewed by CH to ensure each paper met the required eligibility criteria, if unsure about a paper it was also full text reviewed by DW. All papers that were retained post full-text review were subjected to a standardised data extraction procedure. A table was made for the purpose of extracting the following data: title, authors, origin, year of publication, study design, aim, disaster type, sample size and characteristics, variables examined, results, restrictions/limitations, and recommendations. Supplementary file 3 details the charting the data process.

Analytical method

Data was synthesised using a Framework approach [ 32 ], a common method for analysing qualitative research. This method was chosen as it was originally used for large-scale social policy research [ 33 ] as it seeks to identify: what works, for whom, in what conditions, and why [ 34 ]. This approach is also useful for identifying commonalities and differences in qualitative data and potential relationships between different parts of the data [ 33 ]. An a priori framework was established by CH and DW. Extracted data was synthesised in relation to each research question, and the process was iterative to ensure maximum saturation using the available data.

Study selection

The final search strategy yielded 3584 records. Following the removal of duplicates, 2191 records remained and were included in title and abstract screening. A PRISMA flow diagram is presented in Fig.  1 .

PRISMA flow diagram

At the title and abstract screening stage, the process became more iterative as the inclusion criteria were developed and refined. For the first iteration of screening, CH or DW sorted all records into ‘include,’ ‘exclude,’ and ‘unsure’. All ‘unsure’ papers were re-assessed by CH, and a random selection of ~ 20% of these were also assessed by DW. Where there was disagreement between authors the records were retained, and full text screened. The remaining papers were reviewed by CH, and all records were categorised into ‘include’ and ‘exclude’. Following full-text screening, 26 papers were retained for use in the review.

Study characteristics

This section of the review addresses study characteristics of those which met the inclusion criteria, which comprises: date of publication, country of origin, study design, study location, disaster, and variables examined.

Date of publication

Publication dates across the 26 papers spanned from 2008 to 2020 (see Fig.  2 ). The number of papers published was relatively low and consistent across this timescale (i.e. 1–2 per year, except 2010 and 2013 when none were published) up until 2017 where the number of papers peaked at 5. From 2017 to 2020 there were 15 papers published in total. The amount of papers published in recent years suggests a shift in research and interest towards CR and SC in a disaster/ public health emergency context.

Graph to show retained papers date of publication

Country of origin

The locations of the first authors’ institutes at the time of publication were extracted to provide a geographical spread of the retained papers. The majority originated from the USA [ 35 , 36 , 37 , 38 , 39 , 40 , 41 ], followed by China [ 42 , 43 , 44 , 45 , 46 ], Japan [ 47 , 48 , 49 , 50 ], Australia [ 51 , 52 , 53 ], The Netherlands [ 54 , 55 ], New Zealand [ 56 ], Peru [ 57 ], Iran [ 58 ], Austria [ 59 ], and Croatia [ 60 ].

There were multiple methodological approaches carried out across retained papers. The most common formats included surveys or questionnaires [ 36 , 37 , 38 , 42 , 46 , 47 , 48 , 49 , 50 , 53 , 54 , 55 , 57 , 59 ], followed by interviews [ 39 , 40 , 43 , 51 , 52 , 60 ]. Four papers used both surveys and interviews [ 35 , 41 , 45 , 58 ], and two papers conducted data analysis (one using open access data from a Social Survey [ 44 ] and one using a Primary Health Organisations Register [ 56 ]).

Study location

The majority of the studies were carried out in Japan [ 36 , 42 , 44 , 47 , 48 , 49 , 50 ], followed by the USA [ 35 , 37 , 38 , 39 , 40 , 41 ], China [ 43 , 45 , 46 , 53 ], Australia [ 51 , 52 ], and the UK [ 54 , 55 ]. The remaining studies were carried out in Croatia [ 60 ], Peru [ 57 ], Austria [ 59 ], New Zealand [ 56 ] and Iran [ 58 ].

Multiple different types of disaster were researched across the retained papers. Earthquakes were the most common type of disaster examined [ 45 , 47 , 49 , 50 , 53 , 56 , 57 , 58 ], followed by research which assessed the impact of two disastrous events which had happened in the same area (e.g. Hurricane Katrina and the Deepwater Horizon oil spill in Mississippi, and the Great East Japan earthquake and Tsunami; [ 36 , 37 , 38 , 42 , 44 , 48 ]). Other disaster types included: flooding [ 51 , 54 , 55 , 59 , 60 ], hurricanes [ 35 , 39 , 41 ], infectious disease outbreaks [ 43 , 46 ], oil spillage [ 40 ], and drought [ 52 ].

Variables of interest examined

Across the 26 retained papers: eight referred to examining the impact of SC [ 35 , 37 , 39 , 41 , 46 , 49 , 55 , 60 ]; eight examined the impact of cognitive and structural SC as separate entities [ 40 , 42 , 45 , 48 , 50 , 54 , 57 , 59 ]; one examined bridging and bonding SC as separate entities [ 58 ]; two examined the impact of CR [ 38 , 56 ]; and two employed a qualitative methodology but drew findings in relation to bonding and bridging SC, and SC generally [ 51 , 52 ]. Additionally, five papers examined the impact of the following variables: ‘community social cohesion’ [ 36 ], ‘neighbourhood connectedness’ [ 44 ], ‘social support at the community level’ [ 47 ], ‘community connectedness’ [ 43 ] and ‘sense of community’ [ 53 ]. Table  1 provides additional details on this.

How is CR and SC measured or quantified in research?

The measures used to examine CR and SC are presented Table  1 . It is apparent that there is no uniformity in how SC or CR is measured across the research. Multiple measures are used throughout the retained studies, and nearly all are unique. Additionally, SC was examined at multiple different levels (e.g. cognitive and structural, bonding and bridging), and in multiple different forms (e.g. community connectedness, community cohesion).

What is the association between CR and SC on mental wellbeing?

To best compare research, the following section reports on CR, and facets of SC separately. Please see Supplementary file 4  for additional information on retained papers methods of measuring mental wellbeing.

• Community resilience

CR relates to the ability of a community to withstand, adapt and permit growth in adverse circumstances due to social structures, networks and interdependencies within the community [ 11 ].

The impact of CR on mental wellbeing was consistently positive. For example, research indicated that there was a positive association between CR and number of common mental health (i.e. anxiety and mood) treatments post-disaster [ 56 ]. Similarly, other research suggests that CR is positively related to psychological resilience, which is inversely related to depressive symptoms) [ 37 ]. The same research also concluded that CR is protective of psychological resilience and is therefore protective of depressive symptoms [ 37 ].

• Social capital

SC reflects the strength of a social network, community reciprocity, and trust in people and institutions [ 14 ]. These aspects of community are usually conceptualised primarily as protective factors that enable communities to cope and adapt collectively to threats.

There were inconsistencies across research which examined the impact of abstract SC (i.e. not refined into bonding/bridging or structural/cognitive) on mental wellbeing. However, for the majority of cases, research deems SC to be beneficial. For example, research has concluded that, SC is protective against post-traumatic stress disorder [ 55 ], anxiety [ 46 ], psychological distress [ 50 ], and stress [ 46 ]. Additionally, SC has been found to facilitate post-traumatic growth [ 38 ], and also to be useful to be drawn upon in times of stress [ 52 ], both of which could be protective of mental health. Similarly, research has also found that emotional recovery following a disaster is more difficult for those who report to have low levels of SC [ 51 ].

Conversely, however, research has also concluded that when other situational factors (e.g. personal resources) were controlled for, a positive relationship between community resources and life satisfaction was no longer significant [ 60 ]. Furthermore, some research has concluded that a high level of SC can result in a community facing greater stress immediately post disaster. Indeed, one retained paper found that high levels of SC correlate with higher levels of post-traumatic stress immediately following a disaster [ 39 ]. However, in the later stages following a disaster, this relationship can reverse, with SC subsequently providing an aid to recovery [ 41 ]. By way of explanation, some researchers have suggested that communities with stronger SC carry the greatest load in terms of helping others (i.e. family, friends and neighbours) as well as themselves immediately following the disaster, but then as time passes the communities recover at a faster rate as they are able to rely on their social networks for support [ 41 ].

Cognitive and structural social capital

Cognitive SC refers to perceptions of community relations, such as trust, mutual help and attachment, and structural SC refers to what actually happens within the community, such as participation, socialising [ 16 ].

Cognitive SC has been found to be protective [ 49 ] against PTSD [ 54 , 57 ], depression [ 40 , 54 ]) mild mood disorder; [ 48 ]), anxiety [ 48 , 54 ] and increase self-efficacy [ 59 ].

For structural SC, research is again inconsistent. On the one hand, structural SC has been found to: increase perceived self-efficacy, be protective of depression [ 40 ], buffer the impact of housing damage on cognitive decline [ 42 ] and provide support during disasters and over the recovery period [ 59 ]. However, on the other hand, it has been found to have no association with PTSD [ 54 , 57 ] or depression, and is also associated with a higher prevalence of anxiety [ 54 ]. Similarly, it is also suggested by additional research that structural SC can harm women’s mental health, either due to the pressure of expectations to help and support others or feelings of isolation [ 49 ].

Bonding and bridging social capital

Bonding SC refers to connections among individuals who are emotionally close, and result in bonds to a particular group [ 17 ], and bridging SC refers to acquaintances or individuals loosely connected that span different social groups [ 18 ].

One research study concluded that both bonding and bridging SC were protective against post-traumatic stress disorder symptoms [ 58 ]. Bridging capital was deemed to be around twice as effective in buffering against post-traumatic stress disorder than bonding SC [ 58 ].

Other community variables

Community social cohesion was significantly associated with a lower risk of post-traumatic stress disorder symptom development [ 35 ], and this was apparent even whilst controlling for depressive symptoms at baseline and disaster impact variables (e.g. loss of family member or housing damage) [ 36 ]. Similarly, sense of community, community connectedness, social support at the community level and neighbourhood connectedness all provided protective benefits for a range of mental health, wellbeing and recovery variables, including: depression [ 53 ], subjective wellbeing (in older adults only) [ 43 ], psychological distress [ 47 ], happiness [ 44 ] and life satisfaction [ 53 ].

Research has also concluded that community level social support is protective against mild mood and anxiety disorder, but only for individuals who have had no previous disaster experience [ 48 ]. Additionally, a study which separated SC into social cohesion and social participation concluded that at a community level, social cohesion is protective against depression [ 49 ] whereas social participation at community level is associated with an increased risk of depression amongst women [ 49 ].

What is the impact of Infectious disease outbreaks / disasters and emergencies on community resilience?

From a cross-sectional perspective, research has indicated that disasters and emergencies can have a negative effect on certain types of SC. Specifically, cognitive SC has been found to be impacted by disaster impact, whereas structural SC has gone unaffected [ 45 ]. Disaster impact has also been shown to have a negative effect on community relationships more generally [ 52 ].

Additionally, of the eight studies which collected data at multiple time points [ 35 , 36 , 41 , 42 , 47 , 49 , 56 , 60 ], three reported the effect of a disaster on the level of SC within a community [ 40 , 42 , 49 ]. All three of these studies concluded that disasters may have a negative impact on the levels of SC within a community. The first study found that the Deepwater Horizon oil spill had a negative effect on SC and social support, and this in turn explained an overall increase in the levels of depression within the community [ 40 ]. A possible explanation for the negative effect lays in ‘corrosive communities’, known for increased social conflict and reduced social support, that are sometimes created following oil spills [ 40 ]. It is proposed that corrosive communities often emerge due to a loss of natural resources that bring social groups together (e.g., for recreational activities), as well as social disparity (e.g., due to unequal distribution of economic impact) becoming apparent in the community following disaster [ 40 ]. The second study found that SC (in the form of social cohesion, informal socialising and social participation) decreased after the 2011 earthquake and tsunami in Japan; it was suggested that this change correlated with incidence of cognitive decline [ 42 ]. However, the third study reported more mixed effects based on physical circumstances of the communities’ natural environment: Following an earthquake, those who lived in mountainous areas with an initial high level of pre-community SC saw a decrease in SC post disaster [ 49 ]. However, communities in flat areas (which were home to younger residents and had a higher population density) saw an increase in SC [ 49 ]. It was proposed that this difference could be due to the need for those who lived in mountainous areas to seek prolonged refuge due to subsequent landslides [ 49 ].

What types of intervention enhance CR and SC and protect survivors?

There were mixed effects across the 26 retained papers when examining the effect of CR and SC on mental wellbeing. However, there is evidence that an increase in SC [ 56 , 57 ], with a focus on cognitive SC [ 57 ], namely by: building social networks [ 45 , 51 , 53 ], enhancing feelings of social cohesion [ 35 , 36 ] and promoting a sense of community [ 53 ], can result in an increase in CR and potentially protect survivors’ wellbeing and mental health following a disaster. An increase in SC may also aid in decreasing the need for individual psychological interventions in the aftermath of a disaster [ 55 ]. As a result, recommendations and suggested methods to bolster CR and SC from the retained papers have been extracted and separated into general methods, preparedness and policy level implementation.

General methods

Suggested methods to build SC included organising recreational activity-based groups [ 44 ] to broaden [ 51 , 53 ] and preserve current social networks [ 42 ], introducing initiatives to increase social cohesion and trust [ 51 ], and volunteering to increase the number of social ties between residents [ 59 ]. Research also notes that it is important to take a ‘no one left behind approach’ when organising recreational and social community events, as failure to do so could induce feelings of isolation for some members of the community [ 49 ]. Furthermore, gender differences should also be considered as research indicates that males and females may react differently to community level SC (as evidence suggests males are instead more impacted by individual level SC; in comparison to women who have larger and more diverse social networks [ 49 ]). Therefore, interventions which aim to raise community level social participation, with the aim of expanding social connections and gaining support, may be beneficial [ 42 , 47 ].

Preparedness

In order to prepare for disasters, it may be beneficial to introduce community-targeted methods or interventions to increase levels of SC and CR as these may aid in ameliorating the consequences of a public health emergency or disaster [ 57 ]. To indicate which communities have low levels of SC, one study suggests implementing a 3-item scale of social cohesion to map areas and target interventions [ 42 ].

It is important to consider that communities with a high level of SC may have a lower level of risk perception, due to the established connections and supportive network they have with those around them [ 61 ]. However, for the purpose of preparedness, this is not ideal as perception of risk is a key factor when seeking to encourage behavioural adherence. This could be overcome by introducing communication strategies which emphasise the necessity of social support, but also highlights the need for additional measures to reduce residual risk [ 59 ]. Furthermore, support in the form of financial assistance to foster current community initiatives may prove beneficial to rural areas, for example through the use of an asset-based community development framework [ 52 ].

Policy level

At a policy level, the included papers suggest a range of ways that CR and SC could be bolstered and used. These include: providing financial support for community initiatives and collective coping strategies, (e.g. using asset-based community development [ 52 ]); ensuring policies for long-term recovery focus on community sustainable development (e.g. community festival and community centre activities) [ 44 ]; and development of a network amongst cooperative corporations formed for reconstruction and to organise self-help recovery sessions among residents of adjacent areas [ 58 ].

This scoping review sought to synthesise literature concerning the role of SC and CR during public health emergencies and disasters. Specifically, in this review we have examined: the methods used to measure CR and SC; the impact of CR and SC on mental wellbeing during disasters and emergencies; the impact of disasters and emergencies on CR and SC; and the types of interventions which can be used to enhance CR. To do this, data was extracted from 26 peer-reviewed journal articles. From this synthesis, several key themes have been identified, which can be used to develop guidelines and recommendations for deploying CR and SC in a public health emergency or disaster context. These key themes and resulting recommendations are summarised below.

Firstly, this review established that there is no consistent or standardised approach to measuring CR or SC within the general population. This finding is consistent with a review conducted by the World Health Organization which concludes that despite there being a number of frameworks that contain indicators across different determinants of health, there is a lack of consensus on priority areas for measurement and no widely accepted indicator [ 27 ]. As a result, there are many measures of CR and SC apparent within the literature (e.g., [ 62 , 63 ]), an example of a developed and validated measure is provided by Sherrieb, Norris and Galea [ 64 ]. Similarly, the definitions of CR and SC differ widely between researchers, which created a barrier to comparing and summarising information. Therefore, future research could seek to compare various interpretations of CR and to identify any overlapping concepts. However, a previous systemic review conducted by Patel et al. (2017) concludes that there are nine core elements of CR (local knowledge, community networks and relationships, communication, health, governance and leadership, resources, economic investment, preparedness, and mental outlook), with 19 further sub-elements therein [ 30 ]. Therefore, as CR is a multi-dimensional construct, the implications from the findings are that multiple aspects of social infrastructure may need to be considered.

Secondly, our synthesis of research concerning the role of CR and SC for ensuring mental health and wellbeing during, or following, a public health emergency or disaster revealed mixed effects. Much of the research indicates either a generally protective effect on mental health and wellbeing, or no effect; however, the literature demonstrates some potential for a high level of CR/SC to backfire and result in a negative effect for populations during, or following, a public health emergency or disaster. Considered together, our synthesis indicates that cognitive SC is the only facet of SC which was perceived as universally protective across all retained papers. This is consistent with a systematic review which also concludes that: (a) community level cognitive SC is associated with a lower risk of common mental disorders, while; (b) community level structural SC had inconsistent effects [ 65 ].

Further examination of additional data extracted from studies which found that CR/SC had a negative effect on mental health and wellbeing revealed no commonalities that might explain these effects (Please see Supplementary file 5 for additional information)

One potential explanation may come from a retained paper which found that high levels of SC result in an increase in stress level immediately post disaster [ 41 ]. This was suggested to be due to individuals having greater burdens due to wishing to help and support their wide networks as well as themselves. However, as time passes the levels of SC allow the community to come together and recover at a faster rate [ 41 ]. As this was the only retained paper which produced this finding, it would be beneficial for future research to examine boundary conditions for the positive effects of CR/SC; that is, to explore circumstances under which CR/SC may be more likely to put communities at greater risk. This further research should also include additional longitudinal research to validate the conclusions drawn by [ 41 ] as resilience is a dynamic process of adaption.

Thirdly, disasters and emergencies were generally found to have a negative effect on levels of SC. One retained paper found a mixed effect of SC in relation to an earthquake, however this paper separated participants by area in which they lived (i.e., mountainous vs. flat), which explains this inconsistent effect [ 49 ]. Dangerous areas (i.e. mountainous) saw a decrease in community SC in comparison to safer areas following the earthquake (an effect the authors attributed to the need to seek prolonged refuge), whereas participants from the safer areas (which are home to younger residents with a higher population density) saw an increase in SC [ 49 ]. This is consistent with the idea that being able to participate socially is a key element of SC [ 12 ]. Overall, however, this was the only retained paper which produced a variable finding in relation to the effect of disaster on levels of CR/SC.

Finally, research identified through our synthesis promotes the idea of bolstering SC (particularly cognitive SC) and cohesion in communities likely to be affected by disaster to improve levels of CR. This finding provides further understanding of the relationship between CR and SC; an association that has been reported in various articles seeking to provide conceptual frameworks (e.g., [ 66 , 67 ]) as well as indicator/measurement frameworks [ 27 ]. Therefore, this could be done by creating and promoting initiatives which foster SC and create bonds within the community. Papers included in the current review suggest that recreational-based activity groups and volunteering are potential methods for fostering SC and creating community bonds [ 44 , 51 , 59 ]. Similarly, further research demonstrates that feelings of social cohesion are enhanced by general social activities (e.g. fairs and parades [ 18 ]). Also, actively encouraging activities, programs and interventions which enhance connectedness and SC have been reported to be desirable to increase CR [ 68 ]. This suggestion is supported by a recent scoping review of literature [ 67 ] examined community champion approaches for the COVID-19 pandemic response and recovery and established that creating and promoting SC focused initiatives within the community during pandemic response is highly beneficial [ 67 ]. In terms of preparedness, research states that it may be beneficial for levels of SC and CR in communities at risk to be assessed, to allow targeted interventions where the population may be at most risk following an incident [ 42 , 44 ]. Additionally, from a more critical perspective, we acknowledge that ‘resilience’ can often be perceived as a focus on individual capacity to adapt to adversity rather than changing or mitigating the causes of adverse conditions [ 69 , 70 ]. Therefore, CR requires an integrated system approach across individual, community and structural levels [ 17 ]. Also, it is important that community members are engaged in defining and agreeing how community resilience is measured [ 27 ] rather than it being imposed by system leads or decision-makers.

In the aftermath of the pandemic, is it expected that there will be long-term repercussions both from an economic [ 8 ] and a mental health perspective [ 71 ]. Furthermore, the findings from this review suggest that although those in areas with high levels of SC may be negatively affected in the acute stage, as time passes, they have potential to rebound at a faster rate than those with lower levels of SC. Ongoing evaluation of the effectiveness of current initiatives as the COVID-19 pandemic progresses into a recovery phase will be invaluable for supplementing the evidence base identified through this review.

• Recommendations

As a result of this review, a number of recommendations are suggested for policy and practice during public health emergencies and recovery.

Future research should seek to establish a standardised and validated approach to measuring and defining CR and SC within communities. There are ongoing efforts in this area, for example [ 72 ]. Additionally, community members should be involved in the process of defining how CR is measured.

There should be an enhanced effort to improve preparedness for public health emergencies and disasters in local communities by gauging current levels of SC and CR within communities using a standardised measure. This approach could support specific targeting of populations with low levels of CR/SC in case of a disaster or public health emergency, whilst also allowing for consideration of support for those with high levels of CR (as these populations can be heavily impacted initially following a disaster). By distinguishing levels of SC and CR, tailored community-centred approaches could be implemented, such as those listed in a guide released by PHE in 2015 [ 73 ].

CR and SC (specifically cognitive SC) should be bolstered if communities are at risk of experiencing a disaster or public health emergency. This can be achieved by using interventions which aim to increase a sense of community and create new social ties (e.g., recreational group activities, volunteering). Additionally, when aiming to achieve this, it is important to be mindful of the risk of increased levels of CR/SC to backfire, as well as seeking to advocate an integrated system approach across individual, community and structural levels.

It is necessary to be aware that although communities with high existing levels of resilience / SC may experience short-term negative consequences following a disaster, over time these communities might be able to recover at a faster rate. It is therefore important to ensure that suitable short-term support is provided to these communities in the immediate aftermath of a public health emergency or disaster.

Robust evaluation of the community resilience initiatives deployed during the COVID-19 pandemic response is essential to inform the evidence base concerning the effectiveness of CR/ SC. These evaluations should continue through the response phase and into the recovery phase to help develop our understanding of the long-term consequences of such interventions.

Limitations

Despite this review being the first in this specific topic area, there are limitations that must be considered. Firstly, it is necessary to note that communities are generally highly diverse and the term ‘community’ in academic literature is a subject of much debate (see: [ 74 ]), therefore this must be considered when comparing and collating research involving communities. Additionally, the measures of CR and SC differ substantially across research, including across the 26 retained papers used in the current review. This makes the act of comparing and collating research findings very difficult. This issue is highlighted as a key outcome from this review, and suggestions for how to overcome this in future research are provided. Additionally, we acknowledge that there will be a relationship between CR & SC even where studies measure only at individual or community level. A review [ 75 ] on articulating a hypothesis of the link to health inequalities suggests that wider structural determinants of health need to be accounted for. Secondly, despite the final search strategy encompassing terms for both CR and SC, only one retained paper directly measured CR; thus, making the research findings more relevant to SC. Future research could seek to focus on CR to allow for a comparison of findings. Thirdly, the review was conducted early in the COVID-19 pandemic and so does not include more recent publications focusing on resilience specifically in the context of COVID-19. Regardless of this fact, the synthesis of, and recommendations drawn from, the reviewed studies are agnostic to time and specific incident and contain critical elements necessary to address as the pandemic moves from response to recovery. Further research should review the effectiveness of specific interventions during the COVID-19 pandemic for collation in a subsequent update to this current paper. Fourthly, the current review synthesises findings from countries with individualistic and collectivistic cultures, which may account for some variation in the findings. Lastly, despite choosing a scoping review method for ease of synthesising a wide literature base for use by public health emergency researchers in a relatively tight timeframe, there are disadvantages of a scoping review approach to consider: (1) quality appraisal of retained studies was not carried out; (2) due to the broad nature of a scoping review, more refined and targeted reviews of literature (e.g., systematic reviews) may be able to provide more detailed research outcomes. Therefore, future research should seek to use alternative methods (e.g., empirical research, systematic reviews of literature) to add to the evidence base on CR and SC impact and use in public health practice.

This review sought to establish: (1) How CR and SC are quantified in research?; (2) The impact of community resilience on mental wellbeing?; (3) The impact of infectious disease outbreaks, disasters and emergencies on community resilience and social capital?; and, (4) What types of interventions enhance community resilience and social capital?. The chosen search strategy yielded 26 relevant papers from which we were able extract information relating to the aims of this review.

Results from the review revealed that CR and SC are not measured consistently across research. The impact of CR / SC on mental health and wellbeing during emergencies and disasters is mixed (with some potential for backlash), however the literature does identify cognitive SC as particularly protective. Although only a small number of papers compared CR or SC before and after a disaster, the findings were relatively consistent: SC or CR is negatively impacted by a disaster. Methods suggested to bolster SC in communities were centred around social activities, such as recreational group activities and volunteering. Recommendations for both research and practice (with a particular focus on the ongoing COVID-19 pandemic) are also presented.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Social Capital

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This study was supported by the National Institute for Health Research Research Unit (NIHR HPRU) in Emergency Preparedness and Response, a partnership between Public Health England, King’s College London and the University of East Anglia. The views expressed are those of the author(s) and not necessarily those of the NIHR, Public Health England, the UK Health Security Agency or the Department of Health and Social Care [Grant number: NIHR20008900]. Part of this work has been funded by the Office for Health Improvement and Disparities, Department of Health and Social Care, as part of a Collaborative Agreement with Leeds Beckett University.

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Hall, C.E., Wehling, H., Stansfield, J. et al. Examining the role of community resilience and social capital on mental health in public health emergency and disaster response: a scoping review. BMC Public Health 23 , 2482 (2023). https://doi.org/10.1186/s12889-023-17242-x

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ORIGINAL RESEARCH article

Servant leadership, brand love, and work ethic: important predictors of general health in workers in the education sector.

• 1 UPG de Ciencias Empresariales, Escuela de Posgrado, Universidad Peruana Unión, Lima, Perú
• 2 EP de Administración, Facultad de Ciencias Empresariales, Universidad Peruana Unión, Juliaca, Perú
• 3 EP de Administración, Facultad de Ciencias Empresariales, Universidad Peruana Unión, Lima, Perú

Background: Building a path aimed at the wellbeing of workers in the education sector is the fundamental basis to encourage quality education. To fill the gap in knowledge and address this aspect by understanding the behavior of the study population, it was proposed as with the objective of determining if servant leadership, brand love and work ethic predict the general health in workers.

Methods: A non-probability sampling was applied for convenience. For this purpose, a sample of 509 workers from Peru was submitted to study, who completed a questionnaire consisting of: scale of servant leadership, work ethic, GHQ-12 and brand love. By applying a quantitative method using a structural equation modeling partial least squares approach.

Results: The present study demonstrated that the three constructs (servant leadership, brand love, and work ethic) predict the general health of workers in a positive and significant way, in a sample of Peruvian workers in the education sector. Furthermore, the results suggest that these factors can be used to improve the health of employees in educational institutions in Peru and possibly in other contexts as well.

Conclusion: Given these results and after knowing the solidity of the predictions, the importance of promoting general health in workers in the education sector.

Introduction

Currently, many companies have seen the great need to predict future changes in the management of human talent, therefore, one of their priority tasks is to redefine traditional roles and responsibilities, which allow increasing the internal health of the organization through the overall employee health ( Pino et al., 2020 ; Wang et al., 2020 ; Lunde et al., 2022 ; Tinella et al., 2022 ; Bezuidenhout et al., 2023 ); to achieve this end, organizations must have the ability to discover competent people with leadership qualities that promote better results in their work environment, as well as the use of strategies and mechanisms to develop more love ( Tijjang et al., 2023 ), commitment ( Grabowski et al., 2019 ; Tacadena and Muico, 2022 ; Mitonga-Monga et al., 2023 ) and ethics ( Grabowski et al., 2019 ; Sakr et al., 2022 ; Tacadena and Muico, 2022 ), from employees to your organization.

Today, there are few studies carried out to predict the general health of employees within the workplace ( Shi et al., 2022 ), in a post-COVID context where various jobs are carried out from the homes of employees; and it is here where there is a greater need to evaluate the changes in the general health of workers for the education sector. On the other hand, important scientific evidence shows that the practice of the leadership style of bosses/directors/managers has a significant impact on the health of workers ( Sakr et al., 2022 ; Tinella et al., 2022 ; McKimm et al., 2023 ). Although it is true, the transformational leadership is an affective and high-profile leadership style, which is why many institutions disseminate and practice it ( Miao and Cao, 2019 ), however, servant leadership has become one of the most studied, admired, disseminated and useful in various business sectors, due to the variety of benefits it produces ( Kaltiainen and Hakanen, 2022 ). In recent years, researchers have given greater consideration to the study of servant leadership, and how this construct behaves in the various dimensions of the organization ( der Kinderen et al., 2020 ), since not only favors collaborators, managers, senior managers, but its sphere of influence reaches all stakeholders ( Newman et al., 2017 ; Iqbal et al., 2020 ; Meuser and Smallfield, 2023 ).

Taking into consideration the current challenges in the educational environment, where the general health of academic staff is vital for the achievement of the purposes that it pursues, allowing anticipation of the changes and challenges posed in this very relevant field of life itself, it is important consider the factors that have been the reason for this study. Therefore, servant leadership is one that is recognized as a style of leadership focused on serving its followers and satisfying their needs, which in turn produces a shared spirit of purpose, trust, commitment, desire for wisdom, and effort in the community organization ( Gocen and Sen, 2021 ). For another on, brand love is an important factor in the recognition of institutional identity, it is the positive emotional connection with a brand, coming to manifest their love for it, allowing them to be more likely to commit and be loyal to it ( Larregui-Candelaria et al., 2019 ). And in turn, studies on work ethics have been validated in various business sectors, considering it as a set of norms and values that serve as a guideline for the activities of a job, taking the contribution of Sharma and Rai (2015) , who carried out the operationalization of this variable in three parameters from the point of view of the collaborator; work as a central interest in life, moral attitude toward work and intrinsic work motivation.

And in this context, general health has an important meaning in the lives of workers in the education sector, where this construct has currently been linked to many others: such as coping strategies ( Tinella et al., 2022 ), depression ( Gladstone et al., 2018 ), job insecurity ( Setati et al., 2015 ), psychological discomfort ( Jakubiec et al., 2014 ), machine learning ( Hoekstra et al., 2023 ), working capacity ( Kisiel et al., 2023 ), quality of life ( Bezuidenhout et al., 2023 ), among other. Understanding general health as the mental, emotional and physical wellbeing that allows us to face challenges ( Lunde et al., 2022 ) and acquire greater concentration in the activities that are carried out ( Chavez-Espinoza et al., 2022 ).

Previous studies have concentrated on some elements as predictors of general health ( Ebert et al., 2002 ; Mirsaleh et al., 2011 ; Nadi et al., 2020 ; Malakoutikhah et al., 2022 ), however, there is still a need for a scientific precedent where the usefulness of general health as a contextual factor to explore the behavior between servant leadership, brand love, and work ethic of educational workers ( Dahleez and Aboramadan, 2022 ).

In that sense, after a diligent review of the aforementioned background, there has been a growing interest in continuing to study these topics, both on the part of academics and professionals in the business and health sectors. Although scientific evidence validates that among the study topics, the one that has caused the greatest interest is general health focused on various contexts. On the other hand, bibliometric indicators reveal the 10 countries that most disseminate their scientific results on these topics, among which are: United States ( Meriac et al., 2023 ), United Kingdom ( Wang W. et al., 2022 ), Iran ( Malakoutikhah et al., 2022 ), China ( Yuan et al., 2020 ), Australia ( Sajtos et al., 2021 ), India ( Sharma and Rai, 2015 ), Pakistan ( Iqbal et al., 2020 ), Netherlands ( Fernstrand et al., 2017 ), Spain ( Ruiz-Palomino et al., 2021 ), and Germany ( Moll and Kretzschmar, 2017 ). The same ones who have applied their study to various areas, sectors and populations, such as: medicine ( Ebert et al., 2002 ), business ( Suryani et al., 2022 ), social sciences ( Mustafa et al., 2022 ), psychology ( Jakubiec et al., 2014 ), economics ( Peng et al., 2022 ), humanities ( Raja et al., 2020 ), among others. When discerning scientific dissemination by country, it has been found that the studies carried out in the Peruvian population ( Caycho-Rodríguez et al., 2020 ; Pino et al., 2020 ; Chavez-Espinoza et al., 2022 ; Rocha-Vallejos et al., 2022 ; Alipio et al., 2023 ) are very limited, that is, there is very little scientific literature that can provide support and guidance for future studies, and that can provide relevant information to develop communication strategies, health promotion, improving wellbeing and general health in the Peruvian context. Given the prevalence of diseases and the current situation of occupational health, this research aims to fill the knowledge gap and provide a valuable contribution to the academic community and professionals of the sectors involved. Based on existing evidence, the objective was determining whether servant leadership, brand love, and work ethics predict the general health of educational workers.

Literature review

Servant leadership.

Among the leadership approaches that focus on the collaborator is the transformational leadership approach that seeks to influence those they lead in order to achieve business objectives ( Charbonnier-Voirin et al., 2010 ; Miao and Cao, 2019 ; Purwanto, 2020 ; Sjamsoeddin et al., 2023 ), unlike the servant leadership approach that is oriented to the wellbeing of those led ( van Dierendonck and Nuijten, 2011 ). In this sense, a prudent review of the literature on this last topic will refer to the founder of the servant leadership movement, Robert Kiefner Greenleaf, a notable researcher who developed the theoretical foundation of this construct and published his famous work in 1970 called, “The Servant as Leader,” where he describes servant leaders as those who lead through service, but always with the aim of satisfying the needs of collaborators, providing them with learning opportunities and improving their self-management skills ( Eva et al., 2019 ); equally helps and guides the group by showing compassion, healing, awareness, persuasion, management, and commitment to its growth ( Wang W. et al., 2022 ).

Likewise, it encourages employees to reveal their doubts, take on challenges and reward this attitude by providing resources to feel this freedom ( Page and Wong, 2000 ; Olesia et al., 2014 ; Gandolfi and Stone, 2018 ; Lusiani et al., 2020 ; Pino et al., 2020 ; Gocen and Sen, 2021 ). Recent studies provide new evidence on how organizations, through servant leadership behaviors, help employees not only perform better in their tasks, but also to optimally manage work stress ( Quick and Henderson, 2016 ; Zetterberg et al., 2023 ), to reduce job exhaustion that is therefore associated with the psychological and physiological health of the employee ( Kaltiainen and Hakanen, 2022 ).

Approximately since 1990, the relationship between the company and its brand has been investigated ( Batra et al., 2012 ; Bagozzi et al., 2017 ; Na et al., 2023 ), in terms of loyalty, trust and commitment toward organizations, for this reason the study highlights the theme concerning the relationship and emotional connection that is established through trust, commitment, and loyalty ( Larregui-Candelaria et al., 2019 ). In the research by Shi et al. (2022) , refers that the positive connection between trust in the brand and love for the brand has been recently established. In the same way, brand trust is closely linked to attitudinal loyalty due to its ability to provoke positive emotions in customers and workers, in addition to developing a sense of belonging and commitment. There is also a relationship between the company and the employee, which means that employees can commit themselves and be loyal to the brand of the company where they work, considering the few studies that address the issue, some of them refer to the connection between the commitment of staff that goes beyond performing their professional tasks ( Wang and Binti, 2023 ), is also translated as that emotional connection that employees have with the company and how this can influence their health and wellbeing.

The work ethic is considered a construct that indicates how much a person values work in their life. It began as the Protestant work ethic, being a classic work by Max Weber around 1958, being the subject of many studies and discussions for being considered a religiously oriented work, however, over time it was called general ethics from work ( Sharma and Rai, 2015 ). Work ethic is the set of attitudes and behaviors at work, as a motivational construction reflected in behavior ( Sakr et al., 2022 ). In addition, in recent years, a number of investigations show that ethics is a predictor of important results at work, some theorists associate its dimensions with the individual’s job performance ( Woehr et al., 2023 ), job satisfaction and stress ( Meriac et al., 2023 ), therefore, it could be shown that it is somehow related to the health of the worker. Work ethic focuses on how ethical practices in the workplace can improve the health and wellbeing of employees. Recent studies highlight the need to support workers in maintaining ethical behavior in their workplace, even from other non-work settings ( Alfano, 2022 ).

General health

World Health Organization (2004) in its definition of health, it includes the three most important dimensions of life, referring to a complete state of physical, mental, and social wellbeing, and not only the absence of conditions or diseases. The definition of general health encompasses a series of components that define it as a continuous process of satisfaction that enables people to develop their abilities and potential naturally ( Chavez-Espinoza et al., 2022 ). General health reflects a person’s perception of physical symptoms, sleep disorders, anxiety symptoms, depressive symptoms, and social functioning ( Tinella et al., 2022 ), reflecting both positive and negative aspects of health ( Nadi et al., 2020 ).

Furthermore, previous studies have shown that general health reflects not only physical health but also mental health ( Bezuidenhout et al., 2023 ), because general health is a broader outcome than physical and mental health ( Shi et al., 2022 ). A wide range of factors are known to be associated with health status ( Hoekstra et al., 2023 ), such as lifestyle ( Isola, 2020 ), socioeconomic status ( Nadi et al., 2020 ), wellbeing at work ( de Ceballos and Santos, 2015 ), anxiety ( Malakoutikhah et al., 2022 ), perceived disease burden ( Nielsen et al., 2015 ), sociodemographic factors ( Tinella et al., 2022 ), work facilitation ( Shi et al., 2022 ), and work ability ( Kisiel et al., 2023 ). By conducting a thorough review, studies show other multidimensional models, however, it is believed that for this non-clinical study it is better suited using the GHQ-12 ( Montazeri et al., 2003 ; Hystad and Johnsen, 2020 ; Mayhew et al., 2021 ; Lütke et al., 2022 ).

Hypothesis development

Servant leadership predicts general health.

Servant leadership has emerged as an alternative to mitigate some of the stress experienced by professionals in their fields of work; in this context, the application of the PERMA model is proposed, a model that establishes the way in which each individual chooses to carry out activities that make them happy, contributing these activities to generate a feeling of wellbeing, this feeling being what allows the individual to have a positive experience ( Turner, 2022 ). The service leader brings together certain qualities of honesty, righteousness and selflessness that make his collaborators feel good, as they are immersed in an atmosphere of harmony, thus opening the way to a greater likelihood of greater wellbeing for both the collaborators and the leader ( Siu et al., 2015 ; Zeng et al., 2022 ). And servant leadership, beyond being an admirable quality, has a special recognition for fostering positive behavioral outcomes and active participation that contributes to the wellbeing of workers ( Yuan et al., 2020 ).

From another perspective ( Dollard and Bakker, 2010 ; Montano et al., 2017 ), the role of the leader is important for this purpose; thus, the leadership of someone who chooses to give priority to others is required, someone who supports his followers to develop their maximum potential, thus contributing to the mental and psychological health of the workers; that is, in this scenario, the active participation of a service leader who contributes, by his way of acting and proceeding, to the wellbeing of the workers is required; this is a key point in the construction of a healthy work environment ( Cottey and McKimm, 2019 ). This context reinforces the idea that a leader can develop a proactive approach to employee health, since his function, beyond managing human resources, is also based on generating a long-term vision that recognizes how important employee health is to the sustainable success of the company. Based on the above, the following study hypothesis is proposed:

H1: Servant leadership predicts general health in workers in the education sector.

Brand love predicts general health

The researchers ( Ahuvia et al., 2022 ) establish that a consumer who has a deep affinity for a product or service significantly values the brand, this fact denotes interpersonal connections that transcends or goes beyond the commercial transaction and according to the literature a brand has the ability to create a strong lasting emotional bond that impacts the consumer’s overall wellbeing. Furthermore, considering that brand love is associated with the consumer experience, scholars are convinced that from a holistic approach, brand love independently to support any marketing outcome, can also be part of the positive impact on the overall health of individuals and is that according to evidence, when a consumer develops brand love, it tends to create feelings of belonging and identity, thus releasing a positive impact on the welfare of consumers, their mental and physical health ( Junaid et al., 2020 ; Attiq et al., 2022 ; Rodrigues et al., 2022 ); in the context of this study, it is specified that a worker who loves a certain brand in the educational sector, can experience positive feelings of motivation and satisfaction that can boost their contribution to the objectives of the brand, thus maintaining a positive feeling of general health and increase the feeling of commitment to their educational work. In this way, a special emphasis is made that establishes that the investigations that study consumer behavior have begun to focus on consumer welfare that extends to the health of the same, as it is addressed, in some way, that emotional and psychological needs can be addressed within the environment where the brand and the consumer interact ( Bairrada et al., 2019 ). Based on the above, the following study hypothesis is proposed:

H2: Brand love predicts general health in workers in the education sector.

Work ethic predicts general health

Work ethic has been seen as a positive resource that fosters a sense of psychological wellbeing and general health in workers ( Maaz and Farroq, 2017 ; Raja et al., 2020 ). From this concept lies how important it is to preserve a positive state of those who make up an organization, thus having a vision of work ethics that extends to form part of the sustainable development of a company and when workers perceive that work ethics are valued within an organization, healthy working environments are promoted ( Chukwuma et al., 2023 ). In this context, special emphasis is given to human resource management systems where, independently of constantly striving for greater competitiveness, it can also improve work ethics practices ( Tadesse Bogale and Ayenew Birbirsa, 2023 ), since according to Bazzy (2018) , work ethics allows to break the paradigm that establishes that hard work, effort, and other sacrifices are indispensable to achieve success, this is how work ethics fulfills an important function of interceding for the wellbeing and health of workers, maintaining a healthy balance between the work and personal life of the worker. Based on the above, the following study hypothesis is proposed:

H3: Work ethic predicts general health .

This research has focused on determining whether servant leadership, brand love, and work ethics predict the general health of educational workers, and in this way provide relevant information to interest entities that seek to have employees who enjoy greater wellbeing in their work environments; thus, awakening a greater need in leaders to design strategies that seek a healthy balance in their institutions ( Figure 1 ).

Figure 1. Theoretical model proposed. SL, servant leadership; WE, work ethic; LV, brand love; GH, general health.

Materials and methods

Design, procedure, and participants.

Cross-sectional explanatory study ( Ato et al., 2013 ).

In the survey, participation was voluntary for the sample of workers from regular basic education (56%), institutes (5%), and universities (40%). The sample comes from Peru. A non-probability sampling was applied for convenience. To be included in this study, participants had to meet the following inclusion criteria: work as a teacher or administrator in the public sector or private from a regular basic institution, institute, or university, have a minimum of 6 months working in the institution regardless of the type of work. Those who did not meet the inclusion criteria were excluded. The data was collected through an online survey platform (Google Forms). A total of 509 questionnaires were considered. From the descriptive analysis of the demographic information ( Table 1 ), 223 were men and 286 women, 43% of the respondents were between 31 and 43 years old and the majority of the subjects (55%) were married, and 36% of them were single, whilst the rest of the participants stated that they were cohabiting, divorced, and widowed. Workers from the coast and mountains predominate (39% each region). The greatest instruction that stood out was higher education (85%). The public sector stands out with 79%. Most of the participants declared less than 14 years of service at their institution (70%). The study was approved by the Ethics Committee of the EPG of the Universidad Peruana Unión (2022-CE-EPG-0000167). Informed consent and assent were obtained from the institutions participating in the study.

Table 1. Sociodemographic characteristics of the sample.

On the other hand, the surveys were self-administered by each participant. Regarding the servant leadership and work ethic scale, its original language was English, and it went through the pretest process. The survey techniques were in English, so they were translated by two native specialists who speak English and Spanish. Likewise, for the application of the four scales (servant leadership, work ethic, general health, and brand love), validation was carried out by expert judgment (six teachers with a master’s degree and doctorate) who evaluated clarity, objectivity, topicality, organization, sufficiency, intentionality, consistency, coherence, methodology, and relevance, resulting in an Aiken’s V indicator of 90.5%, 91.6%, 90.9%, and 90.7%, respectively. Additionally, a focus group session was held which allowed for sematic modifications of the work context, made up of workers from the education sector: two from regular basic education, two from institutes, and two from university. The questionnaire is ready to be applied to these three groups of educational workers. Regarding data collection, the questionnaire was hosted in the Google Form application, which was shared via WhatsApp, Messenger, and Instagram in order to have a greater reach to the study population. Its application lasted 31 weeks, from October 26, 2022 to June 4, 2023.

Outcome measures

For the purposes of this study, it was estimated to use four scales collected from articles housed in high-impact journals. The data collection instrument was built considering the four scales of the study, finally adding a section of questions to identify the educational level where the participant worked, as well as the institutional region, the labor sector, and other sociodemographic questions. The questionnaire consisted of 32 items: the first 7 items on leadership servant of Gocen and Sen (2021) . For work ethics, the scale of Sharma and Rai (2015) that used 10 items. For general health, the scale known as GHQ-12 applied to the Peruvian context by Chavez-Espinoza et al. (2022) , this instrument in question was adapted taking into account the questions that were adequate for the realization of the present study, of the 12 items only 6 factorially adequate were used. On the other hand, these first three variables were valued on a Likert-type response scale from 1 to 5, where 1 is “Strongly disagree” and 5 is “Strongly agree.” However, to measure love for the brand, 3 items established by Larregui-Candelaria et al. (2019) , the latter was assessed in a 5-point Likert-type response format, ranging from 1: “Completely disagree” to 5: “Completely agree.” Unlike the original instruments, these have been translated and adapted to the Peruvian educational context, considering the particularity of each sector (public and private).

Data analysis

In the data analysis, the partial least square structural equation modeling (PLS-SEM) was used to test the hypotheses. The PLS-SEM is a comprehensive approach to multivariate statistical analysis that includes measurement and structural components to simultaneously examine the relationships between each of the variables in a conceptual model, which has the characteristic of multivariate analysis, that is, it involves a quantity of variables ≥3 ( Hair et al., 2010 ). In addition, the PLS-SEM was used in the present study because it facilitates the construction of theory ( Hair et al., 2011 ). WarpPLS (Version 8.0) was used to perform the PLS-SEM analysis. This software was used because according to Kock (2014) , the WarpPLS provides options to use different algorithms for the external and internal models in the calculation of the scores of the latent variables, such as the path coefficient and the parameters associated with the p -value, identifying and taking into account non-linear relationships in the model structural ( Kock, 2011 ).

The evaluation of a model using PLS-SEM is a two-step process that involves the evaluation of the measurement and structural models ( Chin, 2010 ; Hair et al., 2011 ; Magno et al., 2022 ; Mustafa et al., 2022 ; Peng et al., 2022 ; Zada M. et al., 2022 ; Zada S. et al., 2022 ; Guenther et al., 2023 ).

Evaluation of the measurement model

To assess the quality of the reflective constructs, the convergent validity and reliability of the construct must be assessed, that is, internal consistency ( Chin, 2010 ; Hair et al., 2011 ; Kock, 2015 ). And the following indicators must be met ( Table 2 ):

Table 2. Indicators to assess convergent validity and reliability of the constructs.

Table 3 shows that all the indicators are met. All loadings comply with being greater than 0.7 except for the items SL7 and WE7 whose values are 0.694 and 0.646, respectively, nevertheless, these items have been retained because the reliability indicators as a whole represent a good indicator; the Cronbach’s alpha and CR are greater than 0.7. Likewise, AVE also complies since they are all greater than 0.5. Also the full collinearity VIFs complies since all the values are less than 2.351 which is in the required range; under these terms ( Conforti et al., 2014 ) establish that tolerance lower than 0.2 or an indicator higher than 5 of VIFs represents a multicollinearity problem, for the case of this study the values oscillate between 1.116 and 2.351; this means that, the dispersion of the variables does not have a high correlation between them, this represents a high robustness in the results and estimated coefficient. According to the skewness and kurtosis, it is observed that the data do not have a normal distribution, however, one of the characteristics of the PLS-SEM approach is that it is relatively robust to deviations from normality ( Ramírez et al., 2014 )and requires assumptions less demanding about the distribution of data ( Hair et al., 2013 ). Since all the indicators comply, we proceed to the discriminant assessment.

Table 3. Results of the evaluation of the measurement model.

Discriminant validity provides an indication of the extent to which each construct is different from other constructs in the model ( Chin, 2010 ). To meet discriminant validity, the square root of the AVE for each construct must be greater than the highest correlation between the construct and other constructs in the model ( Chin, 2010 ; Hair et al., 2011 ; Kock, 2014 ). Table 4 shows that the square root of the AVEs for all the constructs is greater than the correlation with the other constructs, indicating that the model has acceptable discriminant validity.

Table 4. Discriminant validity.

Goodness of fit of the structural model

Evaluating the fit of the statistical model to the study data involves evaluating the goodness of fit of the structural model. Table 5 shows the six goodness of fit indices that have been considered ( Kock, 2014 ), with a confidence level of 95%. In the case of the present study, the six fit indices suggested that the model fit was more than acceptable. The predictive validity of a construct can be confirmed when the value of its associated R 2 coefficient is greater than zero. This was the case for all values of the endogenous variables in the model, suggesting acceptable predictive validity across the model.

Table 5. Model fit and quality indices.

Structural model evaluation

To evaluate the structural model, two preliminary criteria must be verified and reported: the importance of the path coefficients and the coefficient value of R 2 for endogenous constructs. Each hypothesis is associated with a causal link in the structural model, which represents the relationships between a pair of constructs. Path coefficients have been calculated for each relationship in the model, as well as their corresponding p -values. Although the path coefficients must be significant, the value of the R 2 coefficient is highly dependent on the research area. Chin (1998) suggests values of 0.67, 0.33, and 0.19 as, respectively, substantial, moderate, and weak measures of R . In behavioral studies, a value of 0.2 for R 2 is generally considered acceptable ( Kock, 2013 ; Hair et al., 2014 ).

In the present study, the R 2 coefficient for GH was 0.43; this means that the proposed model explains 43% of the observed variability ( James et al., 2023 ); that is, servant leadership, love of the brand and work ethic predict the general health of workers by 43%. Therefore, this value has a high and acceptable level. Table 6 and Figure 2 show the results of the hypothesis tests and the evaluation of the path coefficients. The results show a positive and significant predictive value of SL on GH (H1), of LV on GH (H2), and WE on GH (H3).

Table 6. Hypothesis test results.

Figure 2. Results of the structural model.

For the fit index of the global model, the six indices of goodness of fit have been considered ( Kock, 2014 ), with a confidence level of 95%, the efficiency indices are the following:

• Average Path Coefficient (APC) and p < 0.05

• Average R -squared (ARS) and p < 0.05

• Adjusted mean R -square (AARS) > 0.02 and p > 0.05

• Average block VIF (AVIF), acceptable if ≤5, ideally ≤3.3

• Average complete collinearity (AFVIF), acceptable if ≤5, ideally ≤3.3

• Tenenhaus GoF, small ≥0.1, medium ≥0.25, large ≥0.36

In the case of the present study, the six fit indices suggested that the model fit was more than acceptable: APC = 0.247, p < 0.001; ARS = 0.429, p < 0.001; AARS = 0.426, p < 0.001; AVIF = 2,045 (acceptable if ≤5, ideally ≤3.3); AFVIF = 1.751 (acceptable if ≤5, ideally ≤3.3); and Tenenhaus GoF = 0.567 (small ≥0.1, medium ≥0.25, large ≥0.36). The predictive validity of a construct can be confirmed when the value of its associated to the coefficient R 2 is greater than zero. This was the case for all values of the endogenous variables in the model, which suggests an acceptable predictive validity in the whole model. This means that the fit indices submitted for evaluation support the robustness of the model, which affirms that servant leadership predicts general health by 15%; likewise, love for the brand also predicts general health by 10%, while work ethic predicts it by 49%; thus, it stands out that work ethic is a strong predictor of the variability of workers’ general health, this information provides an accurate picture to have a better understanding of the factors that predict general health.

The general health of workers has become an innate need in the work environment, especially in the educational sector, where teaching and administrative staff play a fundamental role in the development of students. Thus, it is important to promote the general health of workers in the education sector, since this act not only has benefits for them individually, but also has a positive impact on the work environment and on the quality of the education provided; in this context, this study proposed as its first objective to determine if servant leadership predicts the general health of employees. According to the findings, servant leadership predicts the general health of employees. This statement is supported by various scientists ( Hoch et al., 2016 ; Wang W. et al., 2022 ; Meuser and Smallfield, 2023 ), servant leadership has increased significantly among business leaders as it is considered a positive quality that is aimed at making them a role model due to their ethical behavior that contributes to the wellbeing of people; about, Wang Z. et al. (2022) and Iqbal et al. (2020) they show that the servant leader has a high capacity to promote the general health of employees through work motivation and empowerment; In this way, it is argued that promoting servant leadership is an assertive decision that opens the fulfillment of common objectives, thus generating a positive state in workers ( Xanthopoulou et al., 2012 ; Miao and Cao, 2019 ).

Additionally, a significant index of the brand love has been detected as a predictor of the general health of employees, this behavior is very recurrent, according to Junaid et al. (2020) the east arises as a result of positive feelings and satisfaction in different areas of life. About, Attiq et al. (2022) they highlight that the happiness, attachment and good relationship of people in the same environment can predict general health; specifically in the case of workers in the education sector, Strauss and Daniels (2013) establish that because teachers are exposed to extreme pressures due to daily work with students, parents and educational policies, their general wellbeing is at risk, attributing this fact to unhappiness in the workplace. work, for which they suggest healthy working conditions, which supposes a positive feeling in the school–teacher relationship, this statement is consistent with Li and Miao (2022) and Li et al. (2019) , who specify that positive emotions are vital issues in the teaching exercise, so the general health of workers is the result of their attachment or love that they maintain with their institution. And it is that every prosperous social connection established over time generates a special feeling called love, the same one that has the capacity to generate a feeling of wellbeing ( Oravecz et al., 2020 ).

Another of the findings guarantees the prediction of work ethics toward the general health of employees; about, Suryani et al. (2022) they place special emphasis on workers developing positive attitudes, including work ethic, which generates a feeling of wellbeing and health that can be moderated by the role assumed by the leader. In addition, another study linked to these results establishes that moral values are highly related to the prosperity of workers; that is, a healthy work environment promotes wellbeing and it is that according to research, workers value working conditions to a great extent, even when there are positive and negative aspects, they remain firm in their work ethic in order to achieve greater wellbeing ( King et al., 2011 ; Tacadena and Muico, 2022 ). Other studies that support the results of this research address work ethics as the construction of attitudes that derive from work-oriented values; in this way, a work environment governed by ethics and morality has a high potential to increase the general health of workers ( Sakr et al., 2022 ; Zúñiga et al., 2022 ); in this context, it is highlighted that promoting ethical principles creates a work environment where employees feel valued and motivated, and that the connection between work ethics and general health contains a solid approach that fosters an ideal work environment for personal development and professional of an individual.

Theoretical implications

This study leaves theoretical evidence of the connection of general health promoted as a result of servant leadership, brand love, and work ethic. The antecedents that were reviewed highlight that promoting servant leadership contributes to the general health of workers, so there is a need to create an adequate management culture in educational institutions, this implies maintaining a work environment where the leader promotes a climate of positive work that allows the wellbeing and health of workers. In addition, other research is highlighted that describes work ethics and love for the brand as a key element for the general health of workers, so a work environment where good practices exist will undoubtedly be a space where the worker express your wellbeing and general health, this being additionally supported by the emotional attachment you feel toward the institution where you work.

Practical implications

A concrete measure to take into account in the study population is to train leaders with a focus on servant leadership, this through training programs for leaders in order to develop the necessary skills that allow them to efficiently guide the work group. Likewise, it is necessary to foster a work environment that promotes for the brand love, establishing strategies and policies that strengthen the sense of belonging and pride of workers toward their institution. Finally, it is important to also prioritize work ethics, for which clear policies must be established in favor of integrity, equity and mutual respect. Therefore, all actions together could significantly improve working conditions, generating a virtuous circle where workers feel valued, encouraging them to contribute to quality education and the achievement of common institutional objectives.

Limitations and future research

Like previous studies, this research has some limitations that should be taken into account in future research. First, only one leadership style, servant leadership, was tested in this study. Therefore, future research should consider the use of other leadership styles (transformational, ethical, compassionate, charismatic, etc.) so that their behavior can be compared to a similar sample. Secondly, given that the study filtered out educational workers who had worked at the institution for a minimum of 6 months, it was a limitation for the research team, because in some institutions the worker was new staff, because the data began to be collected in the first 2 months of the academic year, in this sense, it is recommended to collect data after the half academic year, so that the leadership evaluation is relevant, unless an inclusion criterion unrelated to this is considered.

Third, the sociodemographic data from this study were not used in the hypothesis analysis. In future research, some sociodemographic data could be used as moderator variables, and consider expanding the sample. Fourth, this research only uses one leadership style, future research is expected to use charismatic leadership styles, transformational leadership, transactional leadership, business leadership, and e-leadership. And fifth, it is believed that it could be a great contribution to evaluate these constructs together with other associates, such as: environmental factors, job insecurity, labor ergonomics, among other important topics, as well as comparing the results in a longitudinal study.

And finally, based on the findings of this study, it is suggested that educational institutions promote the servant leadership style among their leaders and managers, including training in servant leadership skills and reinforcing programs that promote their application. In the same way, they should establish strategies that allow employees to foster love and loyalty toward their workplace, promoting the development of specialized programs that promote a healthy attachment to the brand. In addition to promoting a solid work ethic among leaders and employees, which allows favoring the organizational ethical climate. Knowing that this will also generate a better corporate reputation. In short, the results of this study have managed to achieve the proposed objectives and the hypotheses addressed at the beginning of the research have been tested, however, we believe that in future research the correlated construct could be evaluated in other economic sectors, as well as compare results over time.

The present study demonstrated that the three constructs (servant leadership, brand love, and work ethic) predict the general health of workers in a positive and significant way, in a sample of Peruvian workers in the education sector. Furthermore, the results suggest that these factors can be used to improve the health of employees in educational institutions in Peru and possibly in other contexts as well. The nature of the factors has shown that servant leadership skills, rather than a theoretical definition, is a significant factor shaping the health and wellbeing of an educational business community. Better leadership fosters professional attitudes, encourages ethical behavior, and improves worker health.

Data availability statement

The original contributions presented in this study are included in this article/supplementary material, further inquiries can be directed to the corresponding author.

Ethics statement

The studies involving human participants were reviewed and approved by the Ethics Committee of the Universidad Peruana Unión (2022-CE-EPG-0000167). The participants provided their written informed consent to participate in this study.

Author contributions

EL-A: Conceptualization, Data curation, Writing – original draft, Writing – review & editing. MV-G: Conceptualization, Investigation, Methodology, Project administration, Resources, Writing – original draft, Writing – review & editing. DM-L: Data curation, Formal analysis, Funding acquisition, Investigation, Resources, Software, Supervision, Validation, Visualization, Writing – review & editing.

The author(s) declare that no financial support was received for the research, authorship, and/or publication of this article.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher’s note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

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Keywords : servant leadership, brand love, work ethic, general health, education sector, Peru

Citation: Laura-Arias E, Villar-Guevara M and Millones-Liza DY (2024) Servant leadership, brand love, and work ethic: important predictors of general health in workers in the education sector. Front. Psychol. 15:1274965. doi: 10.3389/fpsyg.2024.1274965

Received: 16 August 2023; Accepted: 01 March 2024; Published: 05 April 2024.

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Copyright © 2024 Laura-Arias, Villar-Guevara and Millones-Liza. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Miluska Villar-Guevara, [email protected]

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