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Research Topics & Ideas: Healthcare

100+ Healthcare Research Topic Ideas To Fast-Track Your Project

Finding and choosing a strong research topic is the critical first step when it comes to crafting a high-quality dissertation, thesis or research project. If you’ve landed on this post, chances are you’re looking for a healthcare-related research topic , but aren’t sure where to start. Here, we’ll explore a variety of healthcare-related research ideas and topic thought-starters across a range of healthcare fields, including allopathic and alternative medicine, dentistry, physical therapy, optometry, pharmacology and public health.

NB – This is just the start…

The topic ideation and evaluation process has multiple steps . In this post, we’ll kickstart the process by sharing some research topic ideas within the healthcare domain. This is the starting point, but to develop a well-defined research topic, you’ll need to identify a clear and convincing research gap , along with a well-justified plan of action to fill that gap.

If you’re new to the oftentimes perplexing world of research, or if this is your first time undertaking a formal academic research project, be sure to check out our free dissertation mini-course. In it, we cover the process of writing a dissertation or thesis from start to end. Be sure to also sign up for our free webinar that explores how to find a high-quality research topic.

Overview: Healthcare Research Topics

• Allopathic medicine
• Alternative /complementary medicine
• Veterinary medicine
• Physical therapy/ rehab
• Optometry and ophthalmology
• Pharmacy and pharmacology
• Public health
• Examples of healthcare-related dissertations

Allopathic (Conventional) Medicine

• The effectiveness of telemedicine in remote elderly patient care
• The impact of stress on the immune system of cancer patients
• The effects of a plant-based diet on chronic diseases such as diabetes
• The use of AI in early cancer diagnosis and treatment
• The role of the gut microbiome in mental health conditions such as depression and anxiety
• The efficacy of mindfulness meditation in reducing chronic pain: A systematic review
• The benefits and drawbacks of electronic health records in a developing country
• The effects of environmental pollution on breast milk quality
• The use of personalized medicine in treating genetic disorders
• The impact of social determinants of health on chronic diseases in Asia
• The role of high-intensity interval training in improving cardiovascular health
• The efficacy of using probiotics for gut health in pregnant women
• The impact of poor sleep on the treatment of chronic illnesses
• The role of inflammation in the development of chronic diseases such as lupus
• The effectiveness of physiotherapy in pain control post-surgery

Topics & Ideas: Alternative Medicine

• The benefits of herbal medicine in treating young asthma patients
• The use of acupuncture in treating infertility in women over 40 years of age
• The effectiveness of homoeopathy in treating mental health disorders: A systematic review
• The role of aromatherapy in reducing stress and anxiety post-surgery
• The impact of mindfulness meditation on reducing high blood pressure
• The use of chiropractic therapy in treating back pain of pregnant women
• The efficacy of traditional Chinese medicine such as Shun-Qi-Tong-Xie (SQTX) in treating digestive disorders in China
• The impact of yoga on physical and mental health in adolescents
• The benefits of hydrotherapy in treating musculoskeletal disorders such as tendinitis
• The role of Reiki in promoting healing and relaxation post birth
• The effectiveness of naturopathy in treating skin conditions such as eczema
• The use of deep tissue massage therapy in reducing chronic pain in amputees
• The impact of tai chi on the treatment of anxiety and depression
• The benefits of reflexology in treating stress, anxiety and chronic fatigue
• The role of acupuncture in the prophylactic management of headaches and migraines

Topics & Ideas: Dentistry

• The impact of sugar consumption on the oral health of infants
• The use of digital dentistry in improving patient care: A systematic review
• The efficacy of orthodontic treatments in correcting bite problems in adults
• The role of dental hygiene in preventing gum disease in patients with dental bridges
• The impact of smoking on oral health and tobacco cessation support from UK dentists
• The benefits of dental implants in restoring missing teeth in adolescents
• The use of lasers in dental procedures such as root canals
• The efficacy of root canal treatment using high-frequency electric pulses in saving infected teeth
• The role of fluoride in promoting remineralization and slowing down demineralization
• The impact of stress-induced reflux on oral health
• The benefits of dental crowns in restoring damaged teeth in elderly patients
• The use of sedation dentistry in managing dental anxiety in children
• The efficacy of teeth whitening treatments in improving dental aesthetics in patients with braces
• The role of orthodontic appliances in improving well-being
• The impact of periodontal disease on overall health and chronic illnesses

Tops & Ideas: Veterinary Medicine

• The impact of nutrition on broiler chicken production
• The role of vaccines in disease prevention in horses
• The importance of parasite control in animal health in piggeries
• The impact of animal behaviour on welfare in the dairy industry
• The effects of environmental pollution on the health of cattle
• The role of veterinary technology such as MRI in animal care
• The importance of pain management in post-surgery health outcomes
• The impact of genetics on animal health and disease in layer chickens
• The effectiveness of alternative therapies in veterinary medicine: A systematic review
• The role of veterinary medicine in public health: A case study of the COVID-19 pandemic
• The impact of climate change on animal health and infectious diseases in animals
• The importance of animal welfare in veterinary medicine and sustainable agriculture
• The effects of the human-animal bond on canine health
• The role of veterinary medicine in conservation efforts: A case study of Rhinoceros poaching in Africa
• The impact of veterinary research of new vaccines on animal health

Topics & Ideas: Physical Therapy/Rehab

• The efficacy of aquatic therapy in improving joint mobility and strength in polio patients
• The impact of telerehabilitation on patient outcomes in Germany
• The effect of kinesiotaping on reducing knee pain and improving function in individuals with chronic pain
• A comparison of manual therapy and yoga exercise therapy in the management of low back pain
• The use of wearable technology in physical rehabilitation and the impact on patient adherence to a rehabilitation plan
• The impact of mindfulness-based interventions in physical therapy in adolescents
• The effects of resistance training on individuals with Parkinson’s disease
• The role of hydrotherapy in the management of fibromyalgia
• The impact of cognitive-behavioural therapy in physical rehabilitation for individuals with chronic pain
• The use of virtual reality in physical rehabilitation of sports injuries
• The effects of electrical stimulation on muscle function and strength in athletes
• The role of physical therapy in the management of stroke recovery: A systematic review
• The impact of pilates on mental health in individuals with depression
• The use of thermal modalities in physical therapy and its effectiveness in reducing pain and inflammation
• The effect of strength training on balance and gait in elderly patients

Topics & Ideas: Optometry & Opthalmology

• The impact of screen time on the vision and ocular health of children under the age of 5
• The effects of blue light exposure from digital devices on ocular health
• The role of dietary interventions, such as the intake of whole grains, in the management of age-related macular degeneration
• The use of telemedicine in optometry and ophthalmology in the UK
• The impact of myopia control interventions on African American children’s vision
• The use of contact lenses in the management of dry eye syndrome: different treatment options
• The effects of visual rehabilitation in individuals with traumatic brain injury
• The role of low vision rehabilitation in individuals with age-related vision loss: challenges and solutions
• The impact of environmental air pollution on ocular health
• The effectiveness of orthokeratology in myopia control compared to contact lenses
• The role of dietary supplements, such as omega-3 fatty acids, in ocular health
• The effects of ultraviolet radiation exposure from tanning beds on ocular health
• The impact of computer vision syndrome on long-term visual function
• The use of novel diagnostic tools in optometry and ophthalmology in developing countries
• The effects of virtual reality on visual perception and ocular health: an examination of dry eye syndrome and neurologic symptoms

Topics & Ideas: Pharmacy & Pharmacology

• The impact of medication adherence on patient outcomes in cystic fibrosis
• The use of personalized medicine in the management of chronic diseases such as Alzheimer’s disease
• The effects of pharmacogenomics on drug response and toxicity in cancer patients
• The role of pharmacists in the management of chronic pain in primary care
• The impact of drug-drug interactions on patient mental health outcomes
• The use of telepharmacy in healthcare: Present status and future potential
• The effects of herbal and dietary supplements on drug efficacy and toxicity
• The role of pharmacists in the management of type 1 diabetes
• The impact of medication errors on patient outcomes and satisfaction
• The use of technology in medication management in the USA
• The effects of smoking on drug metabolism and pharmacokinetics: A case study of clozapine
• Leveraging the role of pharmacists in preventing and managing opioid use disorder
• The impact of the opioid epidemic on public health in a developing country
• The use of biosimilars in the management of the skin condition psoriasis
• The effects of the Affordable Care Act on medication utilization and patient outcomes in African Americans

Topics & Ideas: Public Health

• The impact of the built environment and urbanisation on physical activity and obesity
• The effects of food insecurity on health outcomes in Zimbabwe
• The role of community-based participatory research in addressing health disparities
• The impact of social determinants of health, such as racism, on population health
• The effects of heat waves on public health
• The role of telehealth in addressing healthcare access and equity in South America
• The impact of gun violence on public health in South Africa
• The effects of chlorofluorocarbons air pollution on respiratory health
• The role of public health interventions in reducing health disparities in the USA
• The impact of the United States Affordable Care Act on access to healthcare and health outcomes
• The effects of water insecurity on health outcomes in the Middle East
• The role of community health workers in addressing healthcare access and equity in low-income countries
• The impact of mass incarceration on public health and behavioural health of a community
• The effects of floods on public health and healthcare systems
• The role of social media in public health communication and behaviour change in adolescents

Examples: Healthcare Dissertation & Theses

While the ideas we’ve presented above are a decent starting point for finding a healthcare-related research topic, they are fairly generic and non-specific. So, it helps to look at actual dissertations and theses to see how this all comes together.

Below, we’ve included a selection of research projects from various healthcare-related degree programs to help refine your thinking. These are actual dissertations and theses, written as part of Master’s and PhD-level programs, so they can provide some useful insight as to what a research topic looks like in practice.

• Improving Follow-Up Care for Homeless Populations in North County San Diego (Sanchez, 2021)
• On the Incentives of Medicare’s Hospital Reimbursement and an Examination of Exchangeability (Elzinga, 2016)
• Managing the healthcare crisis: the career narratives of nurses (Krueger, 2021)
• Methods for preventing central line-associated bloodstream infection in pediatric haematology-oncology patients: A systematic literature review (Balkan, 2020)
• Farms in Healthcare: Enhancing Knowledge, Sharing, and Collaboration (Garramone, 2019)
• When machine learning meets healthcare: towards knowledge incorporation in multimodal healthcare analytics (Yuan, 2020)
• Integrated behavioural healthcare: The future of rural mental health (Fox, 2019)
• Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis (Gilmore, 2021)
• Mindfulness-Based Interventions: Combatting Burnout and Compassionate Fatigue among Mental Health Caregivers (Lundquist, 2022)
• Transgender and gender-diverse people’s perceptions of gender-inclusive healthcare access and associated hope for the future (Wille, 2021)
• Efficient Neural Network Synthesis and Its Application in Smart Healthcare (Hassantabar, 2022)
• The Experience of Female Veterans and Health-Seeking Behaviors (Switzer, 2022)
• Machine learning applications towards risk prediction and cost forecasting in healthcare (Singh, 2022)
• Does Variation in the Nursing Home Inspection Process Explain Disparity in Regulatory Outcomes? (Fox, 2020)

Looking at these titles, you can probably pick up that the research topics here are quite specific and narrowly-focused , compared to the generic ones presented earlier. This is an important thing to keep in mind as you develop your own research topic. That is to say, to create a top-notch research topic, you must be precise and target a specific context with specific variables of interest . In other words, you need to identify a clear, well-justified research gap.

Need more help?

If you’re still feeling a bit unsure about how to find a research topic for your healthcare dissertation or thesis, check out Topic Kickstarter service below.

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15 Comments

I need topics that will match the Msc program am running in healthcare research please

Hello Mabel,

I can help you with a good topic, kindly provide your email let’s have a good discussion on this.

Can you provide some research topics and ideas on Immunology?

Thank you to create new knowledge on research problem verse research topic

Help on problem statement on teen pregnancy

This post might be useful: https://gradcoach.com/research-problem-statement/

can you provide me with a research topic on healthcare related topics to a qqi level 5 student

Please can someone help me with research topics in public health ?

Hello I have requirement of Health related latest research issue/topics for my social media speeches. If possible pls share health issues , diagnosis, treatment.

I would like a topic thought around first-line support for Gender-Based Violence for survivors or one related to prevention of Gender-Based Violence

Please can I be helped with a master’s research topic in either chemical pathology or hematology or immunology? thanks

Can u please provide me with a research topic on occupational health and safety at the health sector

Good day kindly help provide me with Ph.D. Public health topics on Reproductive and Maternal Health, interventional studies on Health Education

may you assist me with a good easy healthcare administration study topic

May you assist me in finding a research topic on nutrition,physical activity and obesity. On the impact on children

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Qualitative Research – a practical guide for health and social care researchers and practitioners

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Darshini Ayton, Monash University

Tess Tsindos, Monash University

Danielle Berkovic, Monash University

Copyright Year: 2023

Last Update: 2024

ISBN 13: 9780645755404

Publisher: Monash University

Language: English

Formats Available

Conditions of use.

Table of Contents

• Acknowledgement of Country
• About the authors
• Accessibility statement
• Introduction to research
• Research design
• Data collection
• Data analysis
• Writing qualitative research
• Peer review statement
• Licensing and attribution information
• Version history

Ancillary Material

About the book.

This guide is designed to support health and social care researchers and practitioners to integrate qualitative research into the evidence base of health and social care research. Qualitative research designs are diverse and each design has a different focus that will inform the approach undertaken and the results that are generated. The aim is to move beyond the “what” of qualitative research to the “how”, by (1) outlining key qualitative research designs for health and social care research – descriptive, phenomenology, action research, case study, ethnography, and grounded theory; (2) a decision tool of how to select the appropriate design based on a guiding prompting question, the research question and available resources, time and expertise; (3) an overview of mixed methods research and qualitative research in evaluation studies; (4) a practical guide to data collection and analysis; (5) providing examples of qualitative research to illustrate the scope and opportunities; and (6) tips on communicating qualitative research.

About the Contributors

Associate Professor Darshini Ayton is the Deputy Head of the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a transdisciplinary implementation researcher with a focus on improving health and social care for older Australians and operates at the nexus of implementation science, health and social care policies, public health and consumer engagement. She has led qualitative research studies in hospitals, aged care, not-for-profit organisations and for government and utilises a range of data collection methods.  Associate Professor Ayton established and is the director of the highly successful Qualitative Research Methods for Public Health short course which has been running since 2014.

Dr Tess Tsindos  is a Research Fellow with the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a public health researcher and lecturer with strong qualitative and mixed methods research experience conducting research studies in hospital and community health settings, not-for-profit organisations and for government. Prior to working in academia, Dr Tsindos worked in community care for government and not-for-profit organisations for more than 25 years. Dr Tsindos has a strong evaluation background having conducted numerous evaluations for a range of health and social care organisations. Based on this experience she coordinated the Bachelor of Health Science/Public Health Evaluation unit and the Master of Public Health Evaluation unit and developed the Evaluating Public Health Programs short course in 2022. Dr Tsindos is the Unit Coordinator of the Master of Public Health Qualitative Research Methods Unit which was established in 2022.

Dr Danielle Berkovic  is a Research Fellow in the School of Public Health and Preventive Medicine at Monash University in Melbourne, Australia. She is a public health and consumer-led researcher with strong qualitative and mixed-methods research experience focused on improving health services and clinical guidelines for people with arthritis and other musculoskeletal conditions. She has conducted qualitative research studies in hospitals and community health settings. Dr Berkovic currently provides qualitative input into Australia’s first Living Guideline for the pharmacological management of inflammatory arthritis. Dr Berkovic is passionate about incorporating qualitative research methods into traditionally clinical and quantitative spaces and enjoys teaching clinicians and up-and-coming researchers about the benefits of qualitative research.

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• Volume 13, Issue 3
• Application of complexity theory in health and social care research: a scoping review
• Article Text
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• http://orcid.org/0000-0002-4383-8650 Áine Carroll 1 , 2 ,
• Claire Collins 3 ,
• Jane McKenzie 3 ,
• Diarmuid Stokes 4 ,
• Andrew Darley 1
• 1 School of Medicine , University College Dublin , Dublin , Ireland
• 2 Academic Department , National Rehabilitation University Hospital , Dublin , Ireland
• 3 Henley Business School , University of Reading , Reading , UK
• 4 College of Health Sciences , University College Dublin , Dublin , Ireland
• Correspondence to Áine Carroll; aine.carroll{at}ucd.ie

Background Complexity theory has been chosen by many authors as a suitable lens through which to examine health and social care. Despite its potential value, many empirical investigations apply the theory in a tokenistic manner without engaging with its underlying concepts and underpinnings.

Objectives The aim of this scoping review is to synthesise the literature on empirical studies that have centred on the application of complexity theory to understand health and social care provision.

Methods This scoping review considered primary research using complexity theory-informed approaches, published in English between 2012 and 2021. Cochrane Database of Systematic Reviews, MEDLINE, CINAHL, EMBASE, Web of Science, PSYCHINFO, the NHS Economic Evaluation Database, and the Health Economic Evaluations Database were searched. In addition, a manual search of the reference lists of relevant articles was conducted. Data extraction was conducted using Covidence software and a data extraction form was created to produce a descriptive summary of the results, addressing the objectives and research question. The review used the revised Arksey and O’Malley framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-analysis Extension for Scoping Reviews (PRISMA-ScR).

Results 2021 studies were initially identified with a total of 61 articles included for extraction. Complexity theory in health and social care research is poorly defined and described and was most commonly applied as a theoretical and analytical framework. The full breadth of the health and social care continuum was not represented in the identified articles, with the majority being healthcare focused.

Discussion Complexity theory is being increasingly embraced in health and care research. The heterogeneity of the literature regarding the application of complexity theory made synthesis challenging. However, this scoping review has synthesised the most recent evidence and contributes to translational systems research by providing guidance for future studies.

Conclusion The study of complex health and care systems necessitates methods of interpreting dynamic prcesses which requires qualitative and longitudinal studies with abductive reasoning. The authors provide guidance on conducting complexity-informed primary research that seeks to promote rigor and transparency in the area.

Registration The scoping review protocol was registered at Open Science Framework, and the review protocol was published at BMJ Open ( https://bit.ly/3Ex1Inu ).

• QUALITATIVE RESEARCH
• International health services
• Quality in health care

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjopen-2022-069180

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Strengths and limitations of this study

This study builds on previous evidence syntheses and synthesises the literature on empirical studies that have centred on the application of complexity theory to understand health and social care provision.

This review applies the latest guidance for the performance of scoping reviews.

The review covers the years 2012–2021 and includes English language papers only.

The review excluded educational settings.

Health and care systems around the globe are struggling to cope with the imbalance between increasing demands and system constraints. These challenges have been amplified with the advent of the COVID-19 pandemic. Traditional approaches to tackling these challenges have typically taken a positivistic approach using mechanistic linear reductionist methods more suited to physical systems than complex adaptive human systems and have failed to produce the necessary system transformation. These positivist views have been challenged as simplistic by various key complexity philosophers and scientists over the years. 1–5 Complexity theory and science have received increasing academic and health system attention in recent years as appreciation has grown that, to address increasingly complex and systemic issues, there is a need for collaborative, cross-sectoral, multidisciplinary working. However, how best to study complex social systems is unclear. What is acknowledged is that complex systems share certain characteristics; they consist of elements that interact dynamically in a non-linear manner with feedback loops in systems that are open and operate in conditions far from equilibrium. Each complex system has a history, which influences the behaviour of the system which is determined by the nature of the interactions between the elements. These interactions are adaptive and dynamic with unpredictable outcomes. 1 2 6 Preiser and colleagues in 2018 completed an evidence synthesis of prominent authors’ classifications of complex adaptive systems (CAS) features and characteristics and proposed a typology of six organising principles to inform practical implications and methods for studying and understanding complex systems. 6 These are the following: (1) it is constituted relationally; (2) it has adaptive capacities; (3) patterns of behaviour are a consequence of dynamic processes; (4) it is radically open; (5) it is determined contextually and (6) novel qualities emerge through complex causality. While there is an absence of a unifying theory of complexity, it is generally accepted that engaging with complex systems requires an entanglement of theories and methods.

While the increasing adoption of complexity-informed methods to empirically investigate health and social care settings is welcome, the literature to date has been critiqued for engaging with complexity in name only and lacking the required appreciation and engagement with the logic that underpins it. A scoping review performed by Thompson and colleagues in 2016 investigated complexity theory in health services research and found that, although complexity theory in healthcare was potentially useful, conceptual vagueness and variable theoretical application impeded its practical application. 7 In 2017, Rusoja and colleagues performed a systematic literature review examining health-related systems thinking and complexity ideas. 8 Similar to Thompson and colleagues, they also found that the literature was largely theoretical, suggesting the need for additional research involving practical application. These reviews are now somewhat outdated given the dynamic ever-changing flux of healthcare in the time that has passed since the reviews were published. In addition, these reviews focused on healthcare provision while omitting social care which is an integral component of the continuum of integrated care. Furthermore, the authors did not seek to characterise the components of complexity which were being used nor the theoretical underpinning of the research reviewed. Theory is important to research in that good theory informs the performance of high-quality research (qualitative or quantitative) about important issues that advance knowledge in the phenomenon of interest 9 and the Medical Research Council (MRC) guidance on the development and evaluation of complex interventions recommended that interventions should be developed systematically ‘using the best available evidence and appropriate theory’ 10 (p2). They also suggest that qualitative and mixed-methods approaches may be required to answer questions beyond effectiveness. When theory is used inappropriately, the benefit of using theory to inform high-quality research is negatively impacted. If used correctly, complexity theory offers a potentially useful perspective for the conceptualisation and resolution of problems in healthcare. Therefore, we identified a gap in the evidence regarding how complexity theory has been applied in health and social care research which warranted further examination and synthesis of the evidence to date. Evidence to date suggests limited description, features and attributes which may suggest a lack of appreciation of the underlying principles of a complex system when studying phenomena, which will be explored in this review.

The aim of this review is to map and describe the available research which has used complexity theory in health and social care settings. The authors seek to additionally expand on the previous evidence by providing a comprehensive understanding of the literature to date and offer guidance on how to apply complexity theory to research in health and social care in the future.

Ethical approval was not required, and this manuscript is an honest, accurate and transparent account of the study and no important aspects of the study have been omitted.

Guided by Munn and colleagues, 11 the authors determined that a scoping review was the most appropriate approach to systematically explore how complexity theory has been applied in health and social care research. The scoping review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) statement. 12 The initial exploratory search of the literature highlighted significant gaps in current knowledge regarding how and why complexity theory has been applied in health and social care settings. In accordance with best practice for scoping reviews, an a priori protocol was developed and published. 13 The framework for scoping reviews developed by Arksey and O’Malley (2005) and refinements made by subsequent authors 11 14–16 guided the methodology for the current review. This framework consists of six stages: specifying the research question; identifying relevant studies; study selection; charting the data and reporting the results; collating, summarising and reporting the findings; and consultation exercise.

Stage 1: specifying the research question

Following an initial search of the literature (MEDLINE, CINAHL) and consultation with authors of previously published systematic reviews in the area, 7 8 17 18 the scoping review research question was developed: ‘How has complexity theory been applied in health and social care research?’. The scoping review had the following objectives:

To map definitions and descriptions of complexity theory used in research regarding health and social care.

To describe the purpose of studies using the lens of complexity theory and phenomena of interest.

To investigate the methodologies used and the extent to which complexity theory has been employed in health and social care research.

To consider the settings and professions examined in these studies.

To assess the implications and outcomes of the application of complexity theory in health and social care research.

To identify gaps in the evidence base and make recommendations for future research.

To determine guidance for future researchers when applying complexity theory in research regarding health and social care.

Stage 2: identifying relevant studies

Relevant studies were identified according to the inclusion criteria and the Population, Concept and Context (PCC). 16

Population: Health and social care professionals.

Concept: Application of complexity theory in empirical research in health and/or social care.

Context: Health and social care settings.

Building on the evidence produced in the previous evidence syntheses, this scoping review considered qualitative and quantitative primary research using complexity theory–informed approaches, published in the English language between the years 2012 and 2021.

The following types of publications were excluded from the review: retrospective reviews, secondary analysis research, conference abstracts, book reviews, commentaries or editorial articles, opinion papers, letters and non-English articles.

Acknowledging that the review focused on the application of complexity theory regarding the provision of health and social care rather than the experience of receiving care, publications containing patient-only samples were excluded from the screening process.

An initial exploratory search strategy was developed in MEDLINE by three of the authors, including a university librarian experienced in the conduct of systematic reviews, using Medical Subjects Headings and text words ( online supplemental file 1 ). The search was adapted for each subsequent database and any additional key terms were added to all other database search strategies before conducting the searches within all included databases: Cochrane Database of Systematic Reviews, MEDLINE, CINAHL, EMBASE, Web of Science, PSYCHINFO, The NHS Economic Evaluation Database and The Health Economic Evaluations Database. In addition, a manual search of the reference lists of relevant articles was conducted. No quality appraisal was performed as the authors sought to describe, not evaluate, the available evidence on the topic.

Supplemental material

Stage 3: source of evidence selection.

Based on the inclusion and exclusion criteria, the authors independently screened titles, abstracts and full-text papers using the systematic review software tool, Covidence. 19 Each stage involved two reviewers who were independent and blinded to the fellow reviewer decision outcomes to reduce potential bias. Any disagreements were resolved through discussion and a third reviewer was not required. To ensure consistent application of the screening criteria, a pilot test of the screening process was undertaken by the two reviewers using a small, random sample (n=25) of the identified articles based on their titles and abstracts. Relevant articles were retrieved from each database separately and imported into the bibliographic manager, and EndNote and the Bramer method were used for deduplication. 20

Stage 4: data extraction

Data extraction was conducted using the Covidence software. The data extraction form ( Table 1 ) was tested on a small sample of studies (n=10) by two reviewers to ensure consistency and was modified to include further criteria to answer the research question and objections. The results of the data extraction were compared and discussed. No discrepancies occurred during this stage and did not require a third reviewer.

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Data extraction form for included studies

Stage 5: Collating, summarising and reporting the results

Using the information contained in the data extraction form, this step involved a descriptive and numerical summary of the information within the identified publications as they related to the objectives of the review. Full-text publications were referred to if further information was needed from a particular study. The terminology used to describe complex systems was extracted and synthesised using the features and attributes in the Preiser framework. 6 Research purpose(s) were extracted verbatim based on the verbs used in the purpose statement as described in the abstract and/or main body and the authors documented where more than one research purpose was mentioned. The implications were analysed regarding their relevance to practice, policy and research, whereas outcomes pertained to direct impact on the phenomena or tools developed as a result of the research which applied complexity theory.

Stage 6: Patient and public involvement

The hospital patient forum, a platform for dialogue and exchange of information relevant to patients regarding the hospital, participated in the design and interpretation of the results of the scoping review.

A total of 2021 articles were identified. Of these, 676 were duplicates. The titles and abstracts of 1345 articles were screened and 1108 did not meet the inclusion criteria and were therefore excluded. The remaining 237 articles were full-text screened. Full-text screening of the final 237 resulted in the final inclusion of 61 articles. There were 9 systematic reviews identified which were subsequently hand-searched for further relevant articles. The PRISMA flow chart is shown below in Figure 1 .

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PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow chart.

Descriptive summary

The key characteristics of the included studies are described in online supplemental file 2 .

Year of publication

Figure 2 shows the distribution of the year of publication of the papers considered.

Year of publication.

The most publications were in 2018, 2019 and 2020 (eight publications). The fewest were in 2015 (2) followed by 2021 (3). The trendline is quite flat.

Journal of publication

As shown in Figure 3 , there were 43 different journals in which papers were published across a broad range of journal types. The most common journals for publication were Social Science and Medicine (n=7) and BMC Health Service Research (n=4). All other journals published between 1 and 2 papers.

Journal of publication.

Geographical location of study

Of the 61 publications, 17 studies were set in the USA and 11 in Canada and 8 in the UK. The complete geographical locations for the studies are shown in Figure 4 .

Geographical location of study.

Ethical considerations

Complexity studies present distinct ethical challenges for researchers, as unpredictability means research will be performed and decisions taken based on an imperfect understanding. Therefore, researchers need to be open and honest about the uncertainty and reflect critically on the decision-making processes. 21 In our scoping review, studies only reported standard research ethics committee approval procedures.

Objective 1: definitions and descriptions of complexity theory

36 papers (59%) provided a definition of complexity theory. In 23 (38%), no definition or description was given. 2 papers provided descriptions of complexity and 3 provided a definition of CAS. There was great variability in the definitions used.

Characteristics and features

Many different terms were used to describe complex systems. 10 papers used the term characteristics, 9 used concepts, 8 used the term principles and 20 papers were unclear. No papers cited Preiser’s typology. 6 The terms were mapped against the Preiser framework ( Table 2 ) with synonyms grouped against the most aligned principle.

Terms mapped against the features and attributes in the Preiser framework

The most reported terms were self-organisation (n=23), non-linearity (n=22) and emergence (n=18). The least reported features were radically open (n=3) and contextually determined (n=5).

Objective 2: research purpose and phenomenon of interest

Guided by Thompson and colleagues’ synthesis, the articles were analysed for their purpose and the phenomenon investigated. The majority of studies mentioned two or more research purposes (47.5%) across a variety of health and social care phenomena. These research purposes included assess, build, determine, develop, discuss, draw, elucidate, gain, generate, increase, inform, outline, present and unravel. The most common research phenomena with multiple purposes were working environment/context, implementation and change. Following studies with two or more research purposes, the most common research purposes sought to explore (9.8%) and describe (9.8%) the phenomenon. Research purposes aimed at exploring a wide variety of phenomena featured investigations of the role of physician assistants within a CAS, 22 the impact of workplace huddles in clinical practice, 23 the adoption of leadership at a microlevel through the influential acts of organising, 24 responses to intimate partner violence 25 and the naming or classification of physical assaults within relationship in the context of emergency departments. 26

Studies that sought to describe phenomena related to working environment/context included the processes and development of a dementia network, 27 decision-making processes within an intensive care setting [30] and the context of telenursing as a CAS [20]. Other studies sought to describe the clinical implications of non-linear dynamics within intimate partner violence, 28 physician leadership within healthcare organisations 29 and regional sustainability in healthcare improvement. 30

Thus, studies with two or more research purposes represent the most common application of complexity theory in health and social care research. Our analysis shows that the most common phenomena studied were implementation and working environment/context within health and social care respectively with 16 studies each within the identified articles.

Objective 3: research methodologies and application of complexity theory

28 studies (46%) had a qualitative research design. 17 studies (28%) were case studies and 9 studies (15%) used mixed methods. The most common application of complexity theory (52.5%) was as a theoretical framework to understand a phenomenon and conduct data analysis. A further 10 studies used complexity theory exclusively for the purpose of data analysis, whereas 8 studies primarily applied the theory as a theoretical framework. Where complexity theory was used as a theoretical underpinning, it was used to describe the setting or context they were studying as a CAS, to focus on a particular characteristic of complexity or to formulate research questions.

Complexity theory was frequently adopted in qualitative methods of inquiry. Qualitative methods or mixed-method studies (included a qualitative component) were based on case studies or studies which used grounded theory as an analytical method, content analysis and thematic analysis. These studies focused on particular characteristics of complexity theory to interpret their findings or as the foundation of a coding framework. However, some authors defined the exact characteristics of complexity that they were focusing on in their analysis, 29 31–41 whereas other studies broadly described conducting analysis with the lens of complexity theory 26 42–44 or not clearly stated. 45–47

A number of studies featured interventions or programmes that were founded on or informed by complexity theory. 48–50 Two studies featured an assessment framework or tool. 51 52 Tang and colleagues 53 applied complexity as a theoretical framework and data analysis, as well as to develop a model of policy implementation. In a similar fashion, Sawyer and colleagues 49 applied complexity in the development of a logic framework in the context of obesity prevention. One study used complexity theory to develop a conceptual model to help in the design and conduct of community-based health promotion evaluation. 54

Objective 4: settings, disciplines and professions

Of the 61 publications, 10 studies were hospital-based, 10 were based in a health system and 9 in a primary care setting. 2 studies were based in a rehabilitation setting.

A variety of disciplines and professions were reflected in the literature reviewed. We used the term multidisciplinary team (MDT) to describe a range of health service workers, both professionals and non-professionals described in the studies when more than two types of professionals were stated. Where patients were specifically mentioned as part of the MDT, we included that as a separate category, and also where non-traditional MDT members were specifically mentioned.

Of the 61 studies, 22 (34%) involved MDTs. Six (9%) involved nurses and 4 (6%) MDTs including patients. In 2 papers, there were no participants as the study involved documentary analysis and in 2, the participants were not specified.

Objective 5: Implications and outcomes of applying complexity theory

The most frequent implication was exclusively practice-related (44%). A full breakdown of imications and utcomes is provided in online supplemental file 2 . A significant proportion of studies had multiple implications. 21% of the studies contained implications for both practice and research, while 11.5% had implications in all three dimensions. Implications encompassed changes in clinical practice delivery such as huddles, 23 recommendations for motivational interviewing 45 and social work practice guidelines for dealing with families with complex needs. 55 From a policy perspective, recommendations included complexity-informed processes for the implementation of local drugs policy 35 and complexity-compatible policies regarding integrated healthcare. 37 Implications for future research were typically in relation to the phenomenon being investigated and reflection on their own methodological limitations, for example, Gear and colleagues 25 note the need for more diversity in the samples regarding intimate partner violence in a primary care setting while another study promoted the use of social network analysis and ethnographic approaches to explore the shifts in interactions following the implementation of a simulation tool within a healthcare CAS. 34 One study was unclear in their implications, while one study did not explicitly state any implications in the discussion of their findings.

Some studies contained pragmatic outcomes as a result of applying complexity theory. Reed and colleagues 43 developed 12 ‘Simple Rules’ intended to provide actionable guidance to support evidence translation and improvement in complex systems. Hodiamont et al 39 created a conceptual framework that can be used as a basis for the development of a classification of complexity in palliative care, with an understanding of the variance in patients according to their care needs. One study developed seven action recommendations to promote community resilience and population health. 56 Albers Mohrman et al 30 provided organising principles to facilitate change within a CAS, while Sawyer et al 49 developed a logic framework intended to inform sustainable systems change from a whole-systems approach. To identify the extent to which the identified publications were used in subsequent research, we assessed the number of citations of the 61 papers included in our review. As of 1 October 2022, the most cited papers were O’Sullivan et al (41) (219), Ssengooba et al (68) (171) and Tsasis et al (34) (151). Review objectives 6 and 7 will be addressed in the Discussion section.

To the best of the authors’ knowledge, this is the first scoping review to synthesise the literature on the application of complexity theory in health and social care research. Although earlier reviews examining complexity in healthcare literature are available, 7 8 the current review has identified that in the time since their publication, subsequent research has remained largely theoretical, with little progress in terms of the practical application of complexity theory. In addition, although research has occurred within what is described as health systems, none of the final papers had a social care context. Adult social care refers to services that provide support to people with physical disabilities, learning disabilities or physical and mental illnesses. Over a third of publications failed to provide a clear definition of complexity or provide the theoretical context for the research. What was meant by a complex system was ambiguous, heterogeneous and often ill-defined. The limited description, features and attributes used in many papers suggest a lack of appreciation for the principles of a complex system which the current authors believe is a basic requirement before appropriate methods and approaches can be selected for studying phenomena in a complex system. However, we acknowledge that as there is no unifying theory or agreed-upon definition of complexity, 57 58 it is unclear how many features and attributes of a complex system need to be considered when contemplating appropriate approaches, which may explain the lack of detail in the identified studies. Many studies referred to primary studies or discussion papers in the definition or description of complexity theory without citing the founding key theorists. This may be due to the complexities within the theory itself and later authors in the area present accessible literature to help researchers understand its underlying logic. Nonetheless, we would argue that an explicit explanation regarding the researchers’ understanding of and approach to complexity is vital to orientate the reader and highlight whether meaningful engagement with the phenomenon of interest has occurred.

Regarding methodologies employed, our findings indicate that since the Thompson and Rusoja reviews, empirical research has remained primarily qualitative and case study orientated, with most publications in the USA and Canada. Most studies applied complexity as both a theoretical framework and for data analysis. Several studies used complexity theory within qualitative research to analyse and code their data. The review also identified several case studies in which authors sought to understand a setting or service using a complexity-informed lens. This may be because the case study approach seeks to capture the richness of a phenomenon rather than simple cause and effect. To perform research into complex systems in which power law distributions are in operation, there is a need to interpret the processes of dynamicity and that requires qualitative and longitudinal studies. 59 There is also value in an abductive logic of inquiry, which allows for the weaving and entanglement of previous evidence into the greater understanding of the whole complex adaptive system. 60

Health and social care systems deal with many interconnected and entangled issues that require researchers in the field to take a participatory, inclusive, integrated and multidisciplinary approach to research and that requires theoretical and methodological pluralism. Researchers should embrace a rich tapestry of approaches to develop a deep understanding of the complex health and care systems in which we work and go forth with epistemic humility. In the application of complexity theory, there is great variance regarding the detail of how it is used. Some authors explicitly state the characteristics they focus on during data analysis, whereas other studies broadly stated they used the lens of complexity, and some did not clearly state what characteristics they used.

Complexity in health and social care empirical research remains predominantly hospital or health system focused and does not encompass the full continuum of care at this point. However, it does tend to be applied in contexts where multidisciplinary teams are involved, which has implications for managing the complexity of the context.

As nearly half of the studies contained implications for practice, it can be inferred that complexity theory has been empirically applied with the intention of improving health or social care practice. Limited evidence was found within the studies regarding how the knowledge from empirical findings was used to inform or improve the setting or phenomena being studied. However, a number of studies produced pragmatic tools or guides that were informed by complexity theory and for future engagement using a complexity lens. The heterogeneity of empirical studies is perhaps not unsurprising as it is still early days in the application of complexity theory to health and social care. Given Ashby’s law of requisite variety as operationalised in the Ashby space as described by Boisot and McKelvey, 59 this makes it hard to initially establish any consistency in the domain. We therefore propose guidance that could provide more comparability in evidence-based studies going forward.

Guidance for reporting complexity in health and social care research

As there is currently no definitive procedure for reporting such studies, we propose the following items for inclusion. These are not intended to be a rigid checklist but rather flexible guidance to be interpreted and adapted to support the reporting of theoretically and methodologically divergent research.

Provide a clear definition of complexity with an explanation of the theoretical underpinnings of your research so the reader can understand your ontological and epistemological stance. 61 62

Explain why complexity theory is relevant to the phenomenon being studied.

Identify the principles and characteristics of complexity theory that were explored.

Explicitly state how complexity is applied regarding the various stages of the research process, that is, theoretical underpinning, data collection and data analysis.

Describe the outcome or impact of the study in terms of direct change in health and social care setting, practice, policy or research.

Discuss ethical components of applying complexity theory and reflexivity to the specific phenomenon.

Include a statement on what the research is to inform or improve from the outset.

Limitations

The authors adapted their inclusion criteria to include articles from the past 10 years (2012–2021) due to project and time resources. Inclusion of previous years may have facilitated a fuller historical understanding. Health and social care educational settings were excluded and probably merit its own review in the future. Additionally, the search string and screening criteria focused on health and social care professionals and managers as the population in the study. Further evidence synthesis could be conducted in the future regarding patients and how complexity theory has been used to understand their experience. Additionally, future evidence synthesis could include publications that feature studies that include secondary analysis, as it was not the scope of the current study but may yield further insights into the application of complexity theory.

Complexity theory has been increasingly adopted to conduct research in the areas of health and social care. Despite ample application in the context, huge divergence exists in the evidence base regarding how it can be applied and what constitutes its application. For the field to progress and establish transparency in empirical findings, the output of this current review are principles that should be considered and applied, where necessary, in the conduct of research methodologies which involve the various versions of complexity theory. This scoping review builds on the growing field of ‘translational systems research’ 63 that seeks to translate the theoretical concepts of CAS science into practical applications. Although the guidance offered in the current review is based on the synthesis of studies in health and social care, the principles may be applied to other fields, such as business, technology or educational phenomenon. The principles resulting from this scoping review are intended to support the rigorous application of complexity theory in empirical research and contribute to future transparent evidence going forward. The authors believe that the findings and guidance detailed in this review will be of benefit to health and social care professionals, managers and researchers in their commitment to developing services for the people they intend to care for.

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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1
• Data supplement 2

Twitter @AinemCarroll, @adarleyresearch

Contributors AC was responsible for study conceptualisation, study design, data collection, data analysis/synthesis and writing manuscript. AD was responsible for study design, data collection, data analysis/synthesis and writing manuscript. DS was responsible for study design and data collection. CC and JM were responsible for study conceptualisation and reviewing manuscript. AC is responsible for the overall content as guarantor. The guarantor accepts full responsibility for the finished work and/or the conduct of the study, had access to the data and controlled the decision to publish.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Map disclaimer The inclusion of any map (including the depiction of any boundaries therein), or of any geographic or locational reference, does not imply the expression of any opinion whatsoever on the part of BMJ concerning the legal status of any country, territory, jurisdiction or area or of its authorities. Any such expression remains solely that of the relevant source and is not endorsed by BMJ. Maps are provided without any warranty of any kind, either express or implied.

Competing interests None declared.

Patient and public involvement Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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Looking at the papers below, consider

• What is the research approach or design used?
• Does the design enable the researchers to answer the research hypothesis/aims/questions?

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Bartlett, R. (2012). Modifying the diary interview method to research the lives of people with dementia. Qualitative Health Research , 22 (12), 1717–26. Available at: http://journals.sagepub.com/doi/pdf/10.1177/1049732312462240  

Quantitative design

Bainbridge, D. and Seow, H. (2017). Palliative care experience in the last 3 months of life: a quantitative comparison of care provided in residential, hospice, hospitals and the home form the perspectives of bereaved care givers. American Journal of Hospice and Palliative Medicine , 1–8. Available at: http://journals.sagepub.com/doi/pdf/10.1177/1049909117713497

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10 Research Question Examples to Guide your Research Project

Published on October 30, 2022 by Shona McCombes . Revised on October 19, 2023.

The research question is one of the most important parts of your research paper , thesis or dissertation . It’s important to spend some time assessing and refining your question before you get started.

The exact form of your question will depend on a few things, such as the length of your project, the type of research you’re conducting, the topic , and the research problem . However, all research questions should be focused, specific, and relevant to a timely social or scholarly issue.

Once you’ve read our guide on how to write a research question , you can use these examples to craft your own.

Note that the design of your research question can depend on what method you are pursuing. Here are a few options for qualitative, quantitative, and statistical research questions.

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Providing the most effective health and social care is a huge challenge. There are so many products and procedures in use, with more being developed all the time, but often there is little good evidence about what works and what doesn’t.

We commission and fund projects looking at the usefulness of new and existing tests, treatments and devices and at new and existing ways of doing things. We also look at how to improve public health to see what really works in practice.

To make good decisions about what research to fund we need a complete and balanced picture about which questions most urgently need answering. We ask patients, carers, clinicians, health care workers, service managers and researchers. Whoever you are, we need your voice too. Use the form below, with help from the examples, to make your research suggestions.

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Although women are offered a choice where to have their baby; in hospital, in a birthing centre or at home, it doesn’t seem clear which is the best or safest. It is important to find this out because it would help women and healthcare professionals make an informed choice. It could also help to reduce the costs.

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Peanut allergy is very common in the UK and can be life threatening. Patients live in fear of accidentally eating peanuts, are restricted on their food choices and must carry epipens at all times. Due to lack of treatment, the only option is to avoid peanuts and many have accidental reactions. A treatment would be life changing for these patients.

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Local Authorities are reducing levels of street lighting by using dimmer lights or turning lights off at a set time, often midnight. Some members of the public & media think that this could lead to increases in crime or road casualties. Research is needed to see if this is actually happening and to find out if there are other effects on public health and wellbeing.

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A friend of mine takes chondroitin for osteoarthritis in her hands and says it helps with the pain and swelling. I have asked my doctor if I can get it on prescription, but she said that it isn’t a prescription drug. I have looked it up on the internet and there are some sites that says it works for some people. It is easy to get hold of online as a remedy for arthritis. Arthritis is a painful disease which affects a lot of people, and if it’s in your hands it really affects what you are able to do. I think we should test chondroitin properly to see if it helps in hand osteoarthritis and if it does, it should be made available on prescription.

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Healthcare on the brink: navigating the challenges of an aging society in the United States

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• Health services
• Public health

The US healthcare system is at a crossroads. With an aging population requiring more care and a strained system facing workforce shortages, capacity issues, and fragmentation, innovative solutions and policy reforms are needed. This paper aims to spark dialogue and collaboration among healthcare stakeholders and inspire action to meet the needs of the aging population. Through a comprehensive analysis of the impact of an aging society, this work highlights the urgency of addressing this issue and the importance of restructuring the healthcare system to be more efficient, equitable, and responsive.

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Introduction

The United States is undergoing a demographic and health transformation that will have profound implications for its healthcare system and society. The population is aging at an unprecedented rate, with the baby boomer generation, defined as those born between 1946 and 1964, reaching retirement age and living longer than ever before. According to the U.S. Census Bureau, by 2030, all baby boomers will be older than 65, leading to about one in every five residents being retirement age 1 . This shift poses a dual challenge for the healthcare system: how to meet the increasing and complex healthcare needs of the elderly, and how to ensure that the system is prepared and equipped to provide quality and equitable care for this growing segment of the population.

The implications of this demographic shift are far-reaching. The healthcare system, as currently structured, is underprepared for the onslaught of demands this aging population will impose 2 . The system is also fragmented, inefficient, and costly, with gaps in coordination, quality, and access. Moreover, the system does not adequately address the social determinants of health, such as income, education, housing, transportation, and social support, that impact the health outcomes and health behaviors of the older adults 3 , 4 , 5 . Nor does it sufficiently engage the older adults and their caregivers in the planning and delivery of care or leverage the potential of community-based and home-based care models, which can improve the access, quality, and affordability of care for the elderly 6 .

However, the challenge does not end there. There is a growing shortage of healthcare providers, which means that the supply and availability of qualified and skilled healthcare professionals, such as physicians, nurses, pharmacists, clinical social workers and technicians, is insufficient and inadequate to meet the demand and need of the population. This phenomenon is even more pronounced in low- and middle-income countries, as well as in the rural and remote areas within the U.S. According to the World Health Organization (WHO), the global health workforce was 43.5 million in 2018, and is projected to grow to 53.9 million by 2030, but still falls short of the estimated demand of 80 million by 2030, resulting in a global shortfall of 18 million health workers, mostly in low- and middle-income countries 7 . In the U.S., a study by the Association of American Medical Colleges (AAMC) predicts a shortage of up to 139,000 physicians by 2033 8 . The shortage of healthcare providers has significant implications for the health sector, as it affects the access, quality, and cost of healthcare, as well as the health outcomes and satisfaction of the population.

As such, the U.S. is facing a healthcare paradox 9 . On one side, there is an aging population with increasing healthcare needs, and on the other, there is a strained healthcare system grappling with workforce shortages, capacity challenges, and fragmentation. Addressing this paradox requires innovative solutions, policy reforms, and a commitment to restructuring the healthcare system to be more efficient, equitable, and responsive to the needs of its aging citizens.

Although many of these issues may be front-of-mind for geriatrics specialists, many other stakeholders in the eldercare system likely do not understand the full scale of challenges brought on by a rapidly aging populace or may underestimate their preparedness for the resulting changes. This was seen in a recent survey of stakeholders in adult vaccine market, which represents a sector critical in the eldercare industry 10 . When presented with the projected rise of adult vaccines, a trend driven largely by the needs of the aging population, stakeholders across the market were unaware of the associated complexities and anticipated minimal challenges in adopting expanded vaccine schedules 10 . While vaccines represent only a portion of the eldercare market, it is reasonable to believe that this lack of a holistic understanding applies to all sectors in the eldercare industry.

This paper aims to stimulate dialogue and collaboration among the healthcare stakeholders, and to inspire action and innovation to address the needs and aspirations of the aging population. To accomplish this, this work will provide a comprehensive and critical analysis of the impact and implications of an aging society to highlight the importance and urgency of this issue.

Rising tide of healthcare needs: increasing demand and complexity of care

The U.S. population is aging rapidly because of two interrelated factors: the aging of the baby boomer generation, and the increase in life expectancy. The baby boomer generation constitutes the largest cohort in the U.S. history, with about 73 million members 11 . As this cohort reaches retirement age, the share of the population that is 65 and older will increase significantly, from 17% in 2022 to 21% in 2030, and to 23% in 2050 (Fig. 1A ) 12 . By 2050, the number of Americans aged 65 and older will increase by 40%, from 58 million in 2022 to 82 million in 2050.

This figure illustrates the expected growth of the senior population and the associated increase in chronic disease burden. Raw data sourced from “2023 National Population Projections Tables: Main Series”, which utilizes official estimates of resident population on July 1, 2022 as the base for projecting the U.S. population from 2023 to 2100 (panel a ) and Boersma, et al., “Prevalence of Multiple Chronic Conditions Among U.S. Adults, 2018” (panel b ).

The aging population, particularly those over 85 years old, presents new challenges for the medical system. This will be the fastest growing segment, tripling in size from 6.5 million in 2022 to 17.3 million in 2050, a number comparable to the current population of New York state 13 . These elderly adults often suffer from multiple and complex health conditions, including age-related diseases that affect their heart, brain, and immune system. However, the medical system lacks the experience and expertise to effectively treat these diseases and provide specialized, personalized care for this vulnerable group. The increase in the share and size of the older population will have implications for the demand and supply of healthcare and social services, as well as for the economic and fiscal stability of the nation.

One of the main drivers of the increased healthcare demand and utilization among the elderly is the high prevalence of multiple chronic conditions (MCCs), which are defined as having two or more chronic diseases that last at least a year and require ongoing medical attention or limit activities of daily living 14 , 15 . According to the Centers for Disease Control and Prevention (CDC), 88% of older adults have at least one MCC, and 60% have at least two (Fig. 1B ). These include common conditions such as hypertension, arthritis, heart disease, cancer, diabetes, and chronic kidney disease. MCCs are associated with increased mortality, disability, functional decline, and reduced quality of life. Moreover, they pose significant challenges to healthcare provision and management, as they require complex and coordinated care across multiple settings and providers. A study by Machlin et al. (2019) found that among Medicare beneficiaries aged 65 and older, those with MCCs accounted for 94% of total healthcare expenditures in 2010, compared to 6% for those without MCCs 16 . The average annual expenditure per person was $21,342 for those with four or more MCCs, $13,272 for those with three MCCs, $9176 for those with two MCCs, and $5865 for those with one MCC. These figures contrast sharply with the $2025 spent for those without any MCC.

The high prevalence of MCCs among the elderly is expected to persist or even increase in the future, as it is closely linked to the increase in life expectancy. As people live longer, they are more likely to develop and accumulate chronic diseases over time, especially if they have risk factors such as age-related physiological changes, environmental exposures, lifestyle behaviors, genetic predispositions, and social determinants of health. For example, a study by Crimmins and Beltrán-Sánchez 17 found that the increase in life expectancy in the U.S. between 1998 and 2008 was accompanied by an increase in the number of years spent with MCCs, especially among the elderly 17 . The study estimated that the average number of years spent with MCCs increased from 7.2 to 8.6 for men aged 65 and older, and from 10.0 to 11.3 for women aged 65 and older. Therefore, the aging population will face a higher burden of chronic diseases and a lower quality of life in the coming decades. Making matters worse, the health and longevity of the next wave of aging people may also be affected by new external triggers, such as obesity, processed food intake, microbiome changes, climate change, pandemics, and pollution, which can have diverse and unpredictable impacts on different individuals. These triggers can also change the health behaviors and healthcare access of the elderly.

Another challenge that arises from the medication requirements of the aging population is polypharmacy, which is defined as the concurrent use of five or more medications 18 . Individuals aged 65 and over account for over a third of all prescribed medications in the U.S. 19 . However, polypharmacy can have negative consequences, such as increased risk of drug interactions, adverse drug events, medication non-adherence, and medication errors. These can lead to poor outcomes, such as reduced effectiveness, increased morbidity and mortality, and decreased quality of life. Therefore, polypharmacy necessitates careful medication management and monitoring, as well as regular medication reviews and deprescribing when appropriate. A study by Qato et al. 20 found that among U.S. adults aged 65 and older, the prevalence of polypharmacy increased from 31.4% in 1999-2000 to 35.8% in 2011-2012, and the prevalence of potentially inappropriate medication use increased from 8.7% to 10.0% 20 . The study also found that polypharmacy was associated with higher rates of emergency department visits and hospitalizations 20 .

The economic implications of the aging population for the healthcare sector are profound, as they affect not only the healthcare spending and resource utilization, but also the healthcare workforce, the healthcare quality, and the healthcare innovation. According to the Congressional Budget Office, the federal spending on major health programs for the elderly, such as Medicare and Medicaid, will increase from 6.6% of gross domestic product (GDP) in 2020 to 9.2% of GDP in 2050 21 . This projected growth is presumably driven by the older age segments differing healthcare utilization patterns and the increasing complexity of care. Specifically, it is estimated that adults aged 65+ visits doctors 20% more frequently than younger adults and experience a threefold increase in hospitalization rates 22 . This increased utilization and complexity of care drives increased spending as reported in a 2019 Kaiser Family Foundation study that found Medicare spending for beneficiaries aged 65 to 74 averages $7566, which nearly doubles to $16,145 for those aged 85 and older 23 .

The rising tide of healthcare needs due to an aging population is multifaceted, encompassing increased service utilization, higher prevalence of chronic diseases, escalated healthcare spending, and complex medication management. This scenario places unprecedented demands on the healthcare system, calling for innovative approaches in care delivery, financial planning, and resource allocation. Adapting to these changes requires a concerted effort from healthcare providers, policymakers, and stakeholders to ensure that the system is not only responsive but also sustainable in meeting the evolving needs of an aging society. Therefore, it is imperative to recognize and discuss the impact this evolution will have on the demand for healthcare professionals, such as physicians, nurses, pharmacists, and specialists in geriatrics, who will be the critical in providing adequate and appropriate care for the elderly with complex medical needs.

The overburdened healthcare landscape: healthcare delivery challenges

The demand for healthcare workers is expected to outpace the supply, resulting in a projected deficit of 1.2 million registered nurses and 121,900 physicians by 2030 8 , 21 . The healthcare workforce shortage is driven by several factors, such as the aging of the workforce itself, the insufficient supply of new entrants, the uneven distribution across regions and specialties, and the increased workload and stress of the workers. These factors are summarized in Table 1 , along with their implications and notable statistics.

The shortage of healthcare providers will have a ripple effect on the entire healthcare system, affecting the quality, accessibility, and affordability of care. Physician shortages lead to increased mortality, reduced preventive care, and higher healthcare spending 24 . Moreover, the shortage of physicians creates a competitive environment for talent, where healthcare providers vie for the limited pool of available professionals. This competition may result in sector consolidation, where larger and more affluent providers acquire or merge with smaller and less profitable ones, creating economies of scale and scope. However, this consolidation may also have negative consequences, such as reduced competition, increased market power, and higher prices 25 .

Appropriate staffing and labor supply are necessary for delivering care, but they are not sufficient without adequate resources and infrastructure. However, the current system is not well prepared to handle the increase in volume and complexity of care, resulting in overcrowding, wait times, delays, cancellations, and rationing of care. Some of the factors that contribute to this resource gap include:

The state and performance of care delivery. The U.S. healthcare infrastructure is in bad shape and needs more investment and improvement, as a 2017 report by the American Society of Civil Engineers gave it a D+ grade 26 . The system wastes about $750 billion, or 30% of its spending, every year on unnecessary or excessive costs, fraud, and other inefficiencies 27 . It also has high variation in the quality and results of care across different providers, places, and regions, which can lead to too much, too little, or improper use of services 28 . For instance, a report by the Dartmouth Atlas Project showed that Medicare spending per beneficiary ranged by more than three times across regions, and that more spending did not mean better quality or satisfaction 29 .

The lack and imbalance of beds. The U.S. has seen a decline in the number of hospital beds per person from 4.5 in 1980 to 2.4 in 2018, reflecting the move from inpatient to outpatient care and the attempts to save costs and enhance efficiency. However, this trend also implies that there is less excess capacity to cope with fluctuations in demand, such as during pandemics, disasters, or seasonal variations. Furthermore, the allocation of beds across states and regions is unequal, creating differences in access and quality of care for various populations 30 . For example, the states with the lowest number of beds per person are Nevada (1.8), Oregon (1.8), and Washington (1.9), while the states with the highest number of beds per person are South Dakota (4.1), North Dakota (4.0), and West Virginia (3.8) 31 .

The inadequacy and inefficiency of technology. The U.S. healthcare system is lagging behind in the adoption and use of information and communication technology (ICT), such as electronic health records (EHRs), telemedicine, and health information exchange (HIE), which can improve the quality, safety, and coordination of care, as well as reduce the costs and errors of care 32 . According to a 2023 report by the Organisation for Economic Co-operation and Development (OECD), the U.S. only hit the threshold of EHR use in 90% of physician offices, medical specialist offices, hospitals, and emergency rooms in 2021 33 . Although the U.S. joins 17-21 other countries that, depending on the setting, have achieved this milestone, it is one of the four countries that did not report having a mandated system in place 33 . As a result, access to records is inconsistent and may require use of multiple portals to view all of a patient’s medical data, impeding benefits that may be observed through shared medial data across practices 33 . For example, analysis of EHRs have supported efforts to predict risk of conditions such as gestational diabetes 34 and postpartum depression 35 as well as to evaluate medical trends during the COVID-19 pandemic 36 , 37 , 38 . The large volume of data used in such efforts has generated interest for the application of machine-learning, particularly deep learning, to parse through complex and multivariate relationships identifiable within patient records 39 , 40 , 41 . Despite the potential, there are various concerns that arise with the digitization and availability of such records, such as breaches through cyber-attacks 42 . Finding avenues to address such concerns regarding patient privacy will be an important step towards realizing the benefits from advances in EHRs and their analysis to identify health trends.

The resource gap in the U.S. healthcare system will have serious consequences for the health and well-being of the population, especially the elderly, who are more vulnerable and dependent on the availability and quality of care. A study by the Commonwealth Fund found that the U.S. ranked last among 11 high-income countries in the health outcomes and experiences of older adults, with the highest rates of mortality, disability, hospitalizations, and unmet needs 43 . Moreover, the resource gap will have implications for the innovation and competitiveness of the U.S. healthcare sector, as it will limit the ability and opportunity to develop and implement new and better ways of delivering and improving care, such as digital health, precision medicine, and artificial intelligence (AI) 44 .

The U.S. healthcare system is facing a supply crisis, as it is unable to meet the rising and complex needs of the aging population. The system is suffering from a shortage of labor and a constraint of resources, resulting in a capacity gap that affects the efficiency, equity, and quality of care. Addressing this crisis requires a strategic and comprehensive approach that involves increasing the quantity and quality of the healthcare workforce, enhancing the availability and accessibility of the healthcare resources, and improving the performance and productivity of the healthcare delivery. Achieving these goals requires collaboration and coordination among the healthcare providers, policymakers, and stakeholders, as well as a commitment and investment in the healthcare sector.

The fragmentation and disparity in healthcare provision: access challenges and the “rich-poor divide”

The U.S. healthcare system is facing a challenge not only in meeting the demand and supply of healthcare, but also in ensuring that the healthcare is accessible and affordable for all segments of the population, especially the elderly, who often face barriers and difficulties in obtaining and utilizing the care they need. The system is characterized by fragmentation and disparity, meaning that the healthcare provision is divided and disconnected across different providers, payers, and settings, and that the healthcare outcomes and experiences vary widely across different groups, regions, and conditions. These features of the system create inefficiencies, inequities, and inconsistencies in the access and quality of care, which can have negative impacts on the health and well-being of the population.

The fragmentation of the U.S. healthcare system stems from the lack of a universal and integrated system of healthcare coverage and delivery, which leads to gaps and overlaps in the coordination, continuity, and comprehensiveness of care 45 . The system is composed of multiple and competing payers, such as private insurers, public programs, and self-pay individuals, each with their own eligibility criteria, benefit packages, payment mechanisms, and administrative rules. This creates a complex and confusing landscape for the consumers and the providers, who have to navigate through different and often conflicting policies, procedures, and requirements. Moreover, the system is composed of multiple and independent providers, such as hospitals, clinics, physicians, nurses, pharmacists, and others, each with their own practice patterns, quality standards, and information systems. This creates a siloed and disjointed landscape for the delivery and management of care, which can result in duplication, fragmentation, and gaps in the care process.

The fragmentation of the U.S. healthcare system has significant implications for the access and quality of care, especially for the elderly, who often have multiple and complex needs that require coordinated and comprehensive care across different settings and providers. The fragmentation can lead to poor outcomes, such as increased errors, complications, readmissions, and costs, as well as reduced satisfaction, trust, and adherence 46 . For example, a study by Pham et al. 47 found that among Medicare beneficiaries aged 65 and older, those who had four or more chronic conditions and saw 10 or more physicians had twice the rate of preventable hospitalizations than those who saw two or fewer physicians 47 . Moreover, the fragmentation can lead to unmet needs, such as delayed or foregone care, as well as increased burden, such as out-of-pocket expenses, transportation difficulties, and caregiving responsibilities 48 . For example, among Medicare beneficiaries aged 65 and older, 15% reported having trouble getting timely appointments, 12% reported having trouble getting needed tests or treatments, and 9% reported having trouble getting needed medications 49 .

The disparity in the U.S. healthcare system stems from the unequal and unfair distribution of healthcare resources, opportunities, and outcomes across different groups, regions, and conditions, which leads to gaps and differences in the access, quality, and affordability of care 50 . The system is influenced by various factors, such as income, education, race, ethnicity, gender, age, geography, and disability, that affect the health status and health behaviors of the population, as well as the availability and utilization of healthcare services. These factors create a diverse and heterogeneous landscape for the consumers and the providers, who face different and often disproportionate challenges and barriers in obtaining and delivering care. Moreover, the system is influenced by various policies, programs, and practices, such as reimbursement rates, quality measures, and incentives, that affect the allocation and distribution of healthcare resources, such as workforce, facilities, equipment, and technology. These policies, programs, and practices create a dynamic and complex landscape for the payers and the policymakers, who must balance and align the competing and conflicting interests and objectives of the healthcare stakeholders.

As the demand for healthcare services increases due to the aging population, and the supply of healthcare workers and resources remains insufficient and inadequate, a new form of fragmentation and disparity is emerging in the U.S. healthcare system: the rich-poor divide. This refers to the phenomenon where the affluent and urban areas attract and retain more and better healthcare professionals and facilities, while the poor and rural areas are left with fewer and worse healthcare options. This creates a vicious cycle, where the rich areas have more access and quality of care, and the poor areas have less access and quality of care, leading to further widening of the health and economic gaps between them.

One of the factors that contributes to this new form of fragmentation and disparity is the market-driven and competitive nature of the U.S. healthcare sector, where healthcare providers are motivated by financial incentives and rewards to work in areas and specialties that offer higher compensation and recognition. This creates a situation where the supply of healthcare workers is skewed towards the areas and specialties that have more demand and resources, such as urban and affluent areas, and specialty and subspecialty care. Conversely, the supply of healthcare workers is scarce in the areas and specialties that have less demand and resources, such as rural and remote areas, and primary and geriatric care. This results in a mismatch between the needs and the availability of the healthcare workforce, which affects the access and quality of care for different populations.

One of the examples that illustrates this new form of fragmentation and disparity is the rise of travel nurses, who are registered nurses with advanced training and certification in various specialties, and work on a temporary or contract basis in different locations and settings. These nurses are in high demand, as they can fill the gaps and shortages of anesthesiologists (i.e., travel nurse anesthetist) or other nurse specialists, who are often concentrated in urban and academic centers. Moreover, these nurses are well compensated, as they can earn significantly higher salaries and benefits than regular nurses and have more flexibility and autonomy in choosing their assignments and schedules. However, these nurses also contribute to the fragmentation and disparity of the healthcare system, as they tend to work in areas and settings that offer more opportunities and rewards, such as affluent and urban areas, and private and specialty hospitals. This leaves the areas and settings that have less opportunities and rewards, such as poor and rural areas, and public and primary care facilities, with fewer and less qualified healthcare workers, which affects the access and quality of care for the populations they serve.

Addressing the challenge of fragmentation and disparity in the U.S. healthcare system requires a holistic and integrated approach that involves improving the coordination and continuity of care, enhancing the equity and inclusivity of care, and ensuring the affordability and sustainability of care. Achieving these goals requires collaboration and coordination among the healthcare providers, payers, policymakers, and stakeholders, as well as a commitment and investment in the healthcare sector.

Interventions, policy reform, and global comparison

As the number of individuals living into their 80s, 90s and beyond increases dramatically, focus has shifted from extending lifespan to enhancing the quality of these additional years. This approach, known as ‘delayed aging,’ has encompassed investments in technology and policies that increase the number of years lived without the accumulation of chronic conditions and other side effects of aging. Achieving this would result in the compression of morbidity, meaning that chronic illnesses would be concentrated into a shorter period towards the end of life. This shift would not only have an impact on the general health of the population, would also have a positive financial impact. For example, a 2013 study conducted by Goldman et al. estimated that wide-spread delayed aging would save the U.S. $7.1 trillion by 2060.

The emerging field of geroscience is central to increasing the number of healthy years in older populations. This discipline seeks to understand the relationship between aging and age-related diseases, aiming to mitigate the latter by targeting the biological processes of aging itself 51 . A key strategy involves identifying biomarkers and risk factors, such as socioeconomic and lifestyle choices, that predict disease development in later life (Table 2 ). Technological advancements have enabled the aggregation of large multi-Omics datasets and longitudinal medical records from diverse patient groups and different aging tissues 52 . These include blood, brain, muscle, heart, liver, joint, skeleton, fat, among others. For example, the Accelerating Medicines Partnership ® ’s (AMP ® ’s) Alzheimer’s Disease program has used a multi-omic analyses of molecular data from human brain samples to identify over 500 unique drug candidate targets 53 . This wealth of information offers an unprecedented opportunity to leverage AI methodologies to decipher unique patient markers and identify potential interventions.

Once these risk factors are identified, researchers can develop interventions that correct or mitigate them. These include addressing issues such as immune aging, chronic low-grade tissue inflammation, obesity, mitochondrial age-related insufficiency, and brain proteinopathies 54 . For instance, clinical studies with new targeted immune agents aim to rejuvenate the aging immune system using immune aging biomarkers as surrogate endpoints 55 . The hope is that restoring immune health could translate to beneficial downstream effects on the vascular, heart, brain, and kidney systems. The advent of the GLP-1 drug class (e.g., Semaglutide and Tirzepatide), which not only have the potential to prevent obesity-related diseases later in life, also offers a promising avenue for the reversal of metabolic aging and may even promote DNA repair in neurodegenerative diseases 56 . Maintaining muscle function is also crucial, particularly in the context of aging or chronic conditions like sarcopenia 57 . Insights into muscle augmenting factors and the ability to mobilize and differentiate muscle stem cells present critical areas for promoting healthy aging 58 . Bioengineering, including the development of exoskeletons for spinal injury patients, offers potential solutions for maintaining ambulation during aging 59 .

Future interventions may include longitudinal analyses of genome integrity and maintaining DNA fidelity systems. Reducing the accumulation of somatic mutations, which correlate with aging of bone marrow 60 , myeloid cell dysplasia (clonal hematopoiesis) 61 , vascular wall dysfunction 62 , and blood cancers 63 , could be possible. The first successful trials in gene therapy and gene editing have shed new light and promise on human disease, suggesting that restoring the integrity of the human genome and cell systems may increasingly be within our technological reach. This could expand to restore function in autoimmune and fibrotic diseases, further underscoring the transformative potential of geroscience and technology in improving healthcare for the elderly.

As the field of geroscience advances, there is a significant risk that these innovations may predominantly benefit those with substantial resources, further exacerbating the ‘rich-poor’ divide in eldercare and highlighting one type of inequity that tomorrow’s elderly may face. There is already evidence that compression of morbidity may be due more to socioeconomic factors than biological determinants 64 , 65 . However, we do not yet know what other challenges these future generations may face. New and emerging socioeconomic factors and factors associated with marginalized groups in younger populations will have a yet unknown impact on tomorrow’s elderly. The shifting healthcare requirements of younger demographics, characterized by factors such as the increase in gender-affirming care, escalating mental health issues, and substance misuse, including opioids, are likely to affect the future landscape of elderly care in ways that are currently unknown. The opioid crisis, as elaborated in Barbara Kingsolver’s Demon Copperhead , serves as an illustration of how prevalent health and societal challenges can have significant long-term impacts on public health and healthcare systems 66 . This narrative, which mirrors the broader societal problem of substance abuse, underscores the importance of incorporating equity as a fundamental factor in healthcare policy decisions. Ensuring that healthcare improvements, including those emerging from geroscience, are accessible to all, irrespective of their socioeconomic status, is vital to prevent further exacerbation of the economic disparity in eldercare.

To this end, the U.S. has launched policy reforms over the last two decades aimed at securing equitable healthcare for its senior citizens. These measures seek to confront salient challenges in the accessibility, quality, and financial viability of services catering to the elderly. The expansion of Medicaid under the Affordable Care Act (ACA), enacted in 2010, serves as a cornerstone of these initiatives, enhancing Medicaid’s scope to encompass superior benefits, cost reductions, and improved eldercare 67 . Significantly, the ACA reducing the Medicare Part D prescription drug “donut hole,” or drug coverage gaps, improving preventive care with no cost-sharing. Additional initiatives, such as Medicare Advantage, aim to improve eldercare coordination by allowing Medicare beneficiaries to enroll in managed care plans (Medicare Advantage). Medicare Advantage, for example, enrolled over 30.8 million individuals in 2023 alone, and now represent over 50% of all seniors on Medicare 68 .

As components of the patient protection models, accountable care organizations (ACOs) have also exhibited efficacy in enhancing care coordination, leading to improved patient outcomes and decreased costs. A 2021 report from the Centers for Medicare & Medicaid Services (CMS) asserts that ACOs yielded $17.7 billion in gross savings and $6.5 billion in net savings for Medicare between 2021 and 2022, while also improving the quality of care 69 . Alongside these models, enhancements in Long-Term Care and Support Services through the expansion of home and community-based services (HCBS) via Medicaid have substantially widened access to personalized long-term care 70 , 71 . These services are aimed at facilitating elderly individuals to ‘age in place’ 72 . In 2019 alone, Medicaid HCBS expenditures amounted to $162 billion, highlighting a sustained trend towards increased investment in services that promote autonomy and dignity for the elderly 73 . Additionally, this represents a cost-effective approach to long-term care by minimizing dependence on more costly institutional care settings.

Internationally, countries have adopted diverse strategies to address the healthcare needs of their aging populations. Japan and Germany, for example, both emphasize integrated care models and insurance-based solutions, like Germany’s statutory health insurance complemented by long-term care insurance 74 , 75 and Japan’s Long-Term Care Insurance 76 . However, Japan, as one of the world’s oldest populations, faces unique challenges in sustaining its healthcare workforce 77 . In an attempt to compensate for this, this country has positioned itself at the forefront of automating elder care including the development of technologies such as ‘care robots,’ to improve the quality of care in nursing homes 78 . Similar to Japan, Singapore has also implemented technological healthcare solutions for its aging population, investing in improving telemedicine, remote health monitoring apps, wearable wellness technology, and smart home solutions (e.g., fall detect sensors) to facilitate independent living and reduce the burden on the healthcare system 79 . This country is currently second in the word in terms of highest life expectancy, compared with the U.S. at 48 80 . Sweden, number 20 on that list 80 , is internationally recognized as a model for eldercare. It is another country that heavily focuses on ‘aging in place’ by providing heavily funded care through municipal taxes and government grants 81 .

It is often said that there is always tomorrow, implying that we can postpone our actions and decisions to a later date. However, this sentiment cannot hold true anymore when it comes to the care of the aging population. For us to have a prosperous tomorrow, we must begin planning and actioning today. The aging of the population is not a distant or hypothetical scenario, but a present and inevitable reality. We cannot afford to wait and see what happens. We must act and change what happens today. We have the potential and the responsibility to create a better and brighter future for the elderly and for ourselves. The question is: will we?

Data availability

No datasets were generated or analyzed for this manuscript.

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Acknowledgements

The authors thank Andrew Hill and Marie Beitelshees (Bulmore Consulting, Lockport, NY, USA) for their strategic insights, editorial support, and review in preparing this article. This work was funded by Pfizer. We also thank Kristen Prentice for her strategic insight contributions. This work was funded by Pfizer.

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Jones, C.H., Dolsten, M. Healthcare on the brink: navigating the challenges of an aging society in the United States. npj Aging 10 , 22 (2024). https://doi.org/10.1038/s41514-024-00148-2

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Search for a study

You already conduct research in your day-to-day life. This research informs and broadens your understanding of things before you make a decision.  Health and care research is the same. It seeks to find answers to questions about the best options available.  It then uses these discoveries to make decisions about improvements or changes. This is so we can:

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Although health professionals already know a great deal, there are still so many questions that need answers. Sometimes, the outcome of research just confirms that what we have at the moment, is the best available to us right now. 

How research contributes to our NHS

This short film explains the important role that research plays in the NHS and how important it is for the future that we all consider taking part ( video transcript ).

Good research is: 

• Relevant – it answers questions that are important to the health and care of the public
• High quality – it has to follow strict legal standards 
• Safe   – it puts people’s safety and dignity first

The first clinical trial

The first clinical trial was conducted by James Lind.  He was a Scottish doctor and a pioneer of naval hygiene in the Royal Navy.  He conducted the first clinical trial in history in 1747.

James wanted to investigate whether citrus fruits cured scurvy. He selected twelve patients with scurvy on a ship, kept them together and gave them all different diets and monitored them. By the end of the week, the sailors whose daily diet included citrus fruits recovered, therefore proving that citrus fruit could cure scurvy.

We still celebrate this milestone each year on International Clinical Trials Day.  

Myths about research

Understanding the facts is really important when deciding whether to take part in research.  By clicking on the arrow next to each myth you can reveal the facts. 

All health and care research is high risk

All health and social care research has to go through very   strict ethical and regulatory checks   before it can go ahead. There are lots of   different ways to get involved with research . Some involve taking a new medicine or having a new form of treatment, others may be as simple as filling out a questionnaire or leaving a sample. People are very closely monitored while they are taking part in research, so although health and care research is not entirely risk-free, the chances of something going wrong are small.

My doctor will tell me about the research available

Not all health and care professionals will be fully informed about all of the research opportunities available to you. They might also not have the time to discuss it with you in your appointment.  However, it is important to ask about opportunities to get involved in research as your healthcare professional will know how to find out what might be available. You can search for studies on this website  by using the search bar at the very top of each page by typing in your town, postcode, body part, medicine or health condition.  You can also find a condition by pressing the “ view conditions ” button. 

Research can only take place in hospital

Health and care research can take place in many different places, from schools to care homes depending on the type of research. It is more common than ever before for research to take place in non-clinical settings. Digital technology provides a way of getting people involved from the comfort of their own homes.

Health and care research means taking lots of drugs

Not all health and care research involves taking drugs. The research may involve testing a new device to help monitor or administer a medicine for an illness. It could be about monitoring how certain changes in our diet and lifestyle could help the health of our nation in the future. Research might simply involve talking to someone, completing a short questionnaire or even using an app on a mobile device.   There are also many   different ways to be involved in research without being a participant in a research study .

People are treated like guinea pigs

Whatever the type of research, anyone who is involved should be treated with respect. The research is not being done to them but with them. People who participate in research often say that they feel well cared for as they have a dedicated contact within the research staff team. Research teams must follow   ethical guidance   and before the research can take place, they must seek approval for their plan from a Research Ethics Committee. Research that involves new medicines is not tested on people first. It will have gone through a process to ensure it is ready for use with people. 

Health and care research is only about finding a cure

Research aims to prevent diseases as well as cure them. There are a range of factors which can contribute to your health, for example: where you live, what you eat and whether you have a good support network of family and friends. Public health research seeks to answer questions about some of these factors.

Research seeks to find ways for people to live well with long-term conditions. It can help to find out the best ways to care for people living with life-limiting illness and pain, which is known as ’palliative care’. Research can lead to improvements in end-of-life care across all diseases and to help patients to live in comfort and die with dignity.

Health and social care research only involves physical diseases, it cannot help with mental health

People’s health is not limited to physical disease, it includes their mental well being. Research therefore seeks to answer questions about mental health such as is medicine, counselling or a combination of both the best treatment for individuals living with depression? Members of the public can   have a role in identifying and prioritising where health research is focused . Given increased awareness of the effects our mental health can have on our physical well being, this is likely to be a growing area of health and social care research. Read about all the research happening within the NIHR specialty for mental health .

Children are not allowed to participate in health and care research

Children can take part in health and care research with the permission of their legal guardian. The research team may meet with the child to make sure they understand what the research is about. They may use pictures to explain the study. Research in child health is vital to help find new and better ways to care for children. You can find studies for children by typing "Children" in the search box at the very top of this page.

Research only benefits the drug companies

Health research is funded by drug companies, charities and the government, although when the NHS undertakes research specifically for drug companies, the company pays the full cost.  Everyone benefits from the development of new medicines, and without commercial drug companies there would be less research taking place.

Different types of research

Healthcare research

Sometimes health research studies may be referred to as ‘clinical trials’.  They usually involve examining and observing people with different conditions and sometimes comparing them with people who don't have the condition. It can also involve research on samples of blood or other tissues, or tests such as scans or X-rays. Researchers can also analyse information in patient records, or the data from health and lifestyle surveys.

Public health research

Tackles some of the bigger health issues that affect society as a whole, for example, the impact of giving up smoking, how many steps a day for good health etc. It also looks at the benefits, costs, acceptability and the wider impact of treatments.

Social care research

Is about improving the lives of people who receive care and support from our social care sector. Research in social care could be about introducing new devices and technologies such as: lifting equipment to help with residents, exploring the impact of technology driven care environments or changing social care policies and practice. 

Important research discoveries

Launched in 1961,   the contraceptive pill was initially only prescribed to married women, but the law was relaxed in 1967. The pill works by suppressing fertility with either progesterone or oestrogen or, more commonly, a combination of both. 

Penicillin   was discovered in 1928 and developed into a drug in the early 1940s. Today it’s used to treat a broad range of bacterial infections accounting for around 45% of the antibiotics prescribed in the NHS in England.

Research in the 1980s and 1990s showed that low doses of blood-thinning drugs such as   aspirin and warfarin   significantly reduced the number of heart attacks and strokes in people at risk.

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Making Sense of Research in Nursing, Health and Social Care

• Pam Moule - University of the West of England, UK
• Description

What is research and how does it work in the context of nursing, health and social care?

Now in its 7 th  edition, this introductory guide provides you with a concise overview of the different research methods and terminology that you will come across when undertaking research in any course related to nursing, health and social care. The book’s easy-to-follow structure takes you from research novice to confident researcher, helping you to make sense of research and understand how it is implemented in healthcare practice.

The new edition includes:

• Updates in line with the 2018 NMC standards, with more information on the impact of GDPR, consent and vulnerable groups, Personal and Public Involvement (PPI), and work-based projects.
• Improved case examples of real research, with more on group work, poster presentations, research output and dissemination, literature reviews, and dissertations.
• Upgraded activities that include reflective exercises, critical appraisal tools, a dissemination plan, and a glossary, all in the book.

This is essential reading for undergraduate and postgraduate students within the health and therapy professions, nurses, midwives, physiotherapists, radiographers, occupational therapists, speech and language therapists, and paramedics.

Some books reach their silver anniversary and start to look dated and lose their relevancy. Making Sense of Research in Nursing, Health and Social Care however, has renewed and refreshed at each edition and maintains its applicability for today’s health and social care professionals. 

One of the marks of a good textbook is its ability to appeal to readers across professional boundaries and with varying levels of experience in the topic at hand; Moule achieves this both engaging those new to research as well as providing different insights for those with more research knowledge and experience. One of the stated intentions of the book is to make research interesting and in so doing to help practitioners in their adoption of research and evidenced based practice within their work. Moule achieves this with the use of an accessible writing style which is at once both engaging and thought provoking. I would recommend this book as a must have on the shelf for any student of health and social care be they a first year undergraduate or a more experienced individual engaging in post graduate studies.

Evidence-based practice is crucial for the modern healthcare practitioner. Students can often shy away from the topic of research thinking that the subject is too complex for them. However, the benefits of this book in guiding them through the subject include: easy to read short sections with headings, clear key messages at the beginning and end of each chapter and links to current, credible sources of evidence to expand their reading further. Some students find it difficult to seek out credible secondary sources and this book gives them links to guidelines and reports which would be appropriate to inform their assignment work.

Books about the research process are not rare but few authors can clarify the basics with such ease like Pam Moule. This textbook is easy-to-read, speaks to the research novice in accessible language, and leaves the reader feeling well-initiated in research literacy. Without hesitation I would endorse this textbook for undergraduate health and social care students who will draw from it from the first term of study to the last. The chapters take the reader on a journey through critical reading right through to the fundamentals of research project design, and instill habits of systematic thought and process in all elements of research. Included are a number of helpful links and templates as well as examples to aid visualization of new concepts. This book is the perfect springboard to launch health and social care students into evidence-informed practice without overwhelming and scaring them off from what can undoubtedly become a more complex topic with further reading.

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• Published: 10 April 2024

Understanding social needs screening and demographic data collection in primary care practices serving Maryland Medicare patients

• Claire M. Starling 1 ,
• Marjanna Smith 1 ,
• Sadaf Kazi 2 , 3 ,
• Arianna Milicia 3 ,
• Rachel Grisham 4 ,
• Emily Gruber 4 ,
• Joseph Blumenthal 5 &
• Hannah Arem 1 , 6  

BMC Health Services Research volume  24 , Article number:  448 ( 2024 ) Cite this article

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Health outcomes are strongly impacted by social determinants of health, including social risk factors and patient demographics, due to structural inequities and discrimination. Primary care is viewed as a potential medical setting to assess and address individual health-related social needs and to collect detailed patient demographics to assess and advance health equity, but limited literature evaluates such processes.

We conducted an analysis of cross-sectional survey data collected from n  = 507 Maryland Primary Care Program (MDPCP) practices through Care Transformation Requirements (CTR) reporting in 2022. Descriptive statistics were used to summarize practice responses on social needs screening and demographic data collection. A stepwise regression analysis was conducted to determine factors predicting screening of all vs. a targeted subset of beneficiaries for unmet social needs.

Almost all practices (99%) reported conducting some form of social needs screening and demographic data collection. Practices reported variation in what screening tools or demographic questions were employed, frequency of screening, and how information was used. More than 75% of practices reported prioritizing transportation, food insecurity, housing instability, financial resource strain, and social isolation.

Conclusions

Within the MDPCP program there was widespread implementation of social needs screenings and demographic data collection. However, there was room for additional supports in addressing some challenging social needs and increasing detailed demographics. Further research is needed to understand any adjustments to clinical care in response to identified social needs or application of data for uses such as assessing progress towards health equity and the subsequent impact on clinical care and health outcomes .

Peer Review reports

There is increasing attention on the impact of factors such as economic stability, education, neighborhood, and built environment on healthcare outcomes and, in particular, how primary care settings can assess and address individual level health-related social needs (HRSN) [ 1 , 2 ]. In turn, the American Academy of Pediatrics (AAP) and the American Academy of Family Physicians (AAFP) both recommend that primary care providers screen and address social needs as part of routine primary care visits [ 3 ]. Patients with unmet social needs are at a higher risk of missing appointments, frequent emergency room visits, and hospitalization and rehospitalization [ 4 , 5 ]. Identifying social needs and collecting detailed patient demographics in primary care can be used to tailor care, allocate resources effectively, and advocate for equitable policies, making these workflows a critical step towards advancing health equity [ 1 , 2 , 3 ].

Despite acknowledgement of the importance of integrating social care in clinical settings including a recent mandate by the Centers for Medicare and Medicaid services for screening in inpatient settings, the implementation of social needs screening and demographic data collection is complex and resource intensive [ 6 , 7 ]. Furthermore, patients who screen positive for social needs may decline assistance to address those needs. These occurrences may prove frustrating to those conducting screening if they lack sufficient training on delivering screening or assisting individuals with addressing social needs [ 8 ]. Additionally, while many practices already collect basic demographic data such as age, ethnicity, and race, demographic information is not always collected in a culturally sensitive or inclusive manner. Demographic data collection processes are not standardized, and many demographic fields (e.g., education level, sexual orientation, and disability status) are sometimes not asked at all. As part of a contract to provide technical assistance to Maryland Primary Care Program (MDPCP) practices to support social needs screening and demographic data collection, we explored collected survey data to understand current practices around social needs screening and demographic data collection as well as potential areas for growth in screening delivery.

Study population

MDPCP is a voluntary program for eligible primary care practices that provides funding and support for the delivery of advanced primary care for Medicare beneficiaries throughout Maryland. MDPCP supports the overall health care transformation process and allows primary care providers to play an increased role in disease prevention, management of chronic disease, and prevention of unnecessary hospital utilization [ 9 ]. The primary goal of MDPCP is the sustainable transformation of primary care across Maryland to include all the elements of advanced primary care to support the health needs of state residents [ 9 ]. MDPCP is co-administered by teams at the Maryland Department of Health and the Center for Medicare and Medicaid Innovation (CMMI). At the time of the survey, the MDPCP network included n  = 507 participating primary care practices representative of every county in Maryland.

MDPCP offers a combination of financial incentives and other supports tailored to primary care practices. These incentives encompass non-visit-based payments specifically designed for care coordination initiatives, as well as performance-based incentives, rewarding practices for achieving clinical quality, patient experience, and utilization benchmarks. In addition to financial incentives, MDPCP provides a variety of additional supports for care transformation MDPCP practices are paired with a Practice Transformation Coaches, who provide guidance, answer questions, and work directly with practices to improve processes that improve quality of care and decrease costs. In addition to Coaches, practices have access to the MDPCP Learning System encompassing a myriad of learning opportunities including User Groups, All-Practice Calls, and other collaborative forums for practices to learn from subject matter experts and fellow participants. Practices also have access to a handful of Guides including the Advancing Primary Care Guide, which provides information on MDPCP requirements, tactics for advancing the functions of primary care, and achieving care transformation. Additionally, practices have the option to partner with a Care Transformation Organization (CTO), who can assist with care management or other related patient services.

Data collection

Care transformation requirement (CTR) reporting questions ask MDPCP participants about progress on specific MDPCP requirements that span the five comprehensive primary care functions (Appendix 1 ). The five key functions of advanced primary care are care management, access and continuity, comprehensiveness, and coordination across the continuum of care, beneficiary and caregiver experience, and planned care for health outcomes. The questionnaire is developed by CMMI, and MDPCP participants respond in the online Centers for Medicare and Medicaid Services (CMS) program portal twice annually, as a requirement of program participation (Appendix 2 ). The survey used in this analysis was collected in the third quarter of 2022. This analysis was deemed exempt by the Georgetown/MedStar Institutional Review Board (Study 4698).

Statistical analysis

We used descriptive statistics to review social needs screening and demographic data collection responses from MDPCP practices . We conducted additional analysis to investigate responses by practice characteristics including practice size (small 1–2, medium 3–7, large 8 + providers) and hospital affiliation (yes or no). Further, a stepwise regression analysis was used to determine factors predicting the routine screening of beneficiaries for unmet social needs, comparing all beneficiaries to a specific targeted subsection. Variables used in the model were practice size, and hospital affiliation. 487 of the 507 records were used for regression analyses. We excluded practices if they did not report screening beneficiaries ( n  = 4), practice size ( n  = 1), or hospital affiliation status ( n  = 15). SAS 9.4 (Cary, NC) was used in all analyses.

Practice responses on social needs screening and referral processes are presented in Table  1 . Among the MDPCP practices, nearly all reported some form of social needs screening for all (63%) or at least some (36%) beneficiaries. Many practices reported utilizing a social needs screening tool developed by the practice or affiliated health system (32%). Other practices reported screening using standardized screening tools, including, an unspecified standardized tool (21%); EHR-specific tool (19%); Accountable Health Communities (14%); and PRAPARE (5%). There was substantial variation in EHR vendors, with 23% of practices using EPIC, 17% using eClinicalWorks, 14% using Cerner, and 11% using Athenahealth. Approximately half (49.5%) of the practices reported conducting social needs screening annually, while 18% of practices reported conducting screenings at every visit and 15% when indicated based on reason for visit. Just over a quarter (27%) of practices reported linking responses to discrete ICD-10 or Social Determinants of Health (SDOH) Z codes.

Survey responses revealed variability regarding which patients receive social needs screening, screening frequency, EHR integration and use of Z-codes based on practice characteristics (Appendix 3 ). In an exploratory multivariate logistic regression we found that practices with a hospital affiliation were more likely to screen a targeted population than all patients (OR = 1.54, 95% CI = 1.05–2.27) and practices that were small- (1–2 providers) or medium-sized (3–7 providers) were more likely to screen all patients. (OR = 0.46, 95% CI = 0.26–0.80; OR = 0.46, 95% CI = 0.27–0.78, respectively; data shown in text only). Practices had the opportunity to describe which beneficiaries were targeted. Responses included individuals at high risk ( n  = 67) or experiencing recent mental or clinical health events ( n  = 18), participants in care management or care coordination programs ( n  = 82), Health Equity Advancement Resource and Transformation (HEART) patients ( n  = 25), and attendees of annual wellness visits ( n  = 40).

When practices were asked to select social needs that they prioritize, common responses were transportation (93%), food insecurity (89%), housing instability (86%), financial resource strain (85%), and social isolation (84%) (Table  2 ). The least common needs prioritized were internet access (42%), phone access (46%), employment (48%), and language access (51%). Practices also reported which social needs were most challenging to support. The greatest challenges came with addressing housing instability (31%), internet access (31%), financial resource strain (30%), and medication affordability (30%).

Nearly all practices reported collecting patient demographics in some capacity (99%), with most practices reporting that demographic data are collected by a staff member (70%), collected at every visit (51%), annually (23%), or only at the patient’s initial visit (20%). Race and primary language were collected by nearly all practices (96%), gender identity was collected by 92%, relationship status by 87%, ethnicity by 87%, and employment status by 84% of practices. Other demographic factors were less commonly asked: only 49% of practices reported asking about sexual orientation, 48% asked about disability status, and 38% asked about highest level of education.

In this study we found that primary care practices participating in the MDPCP program overall had a high rate of social risk factor screening, with many using screeners that had been developed to meet individual practice needs. Commonly prioritized domains included transportation, food insecurity, housing instability, financial strain, and social isolation, the last being a commonly cited problem among older adults. Describing patterns of screening and demographics in this sample of practices across the state increase understanding of successes and challenges in real-world practice settings and informs potential future interventions.

Determining which patients should be screened and by whom in a busy primary care setting, as well as who can respond to identified needs, can be challenging. In our study there were differences both in which patients were screened and how often by practice [ 10 , 11 ]. Open ended responses suggested that among some MDPCP practices, screening was performed only for individuals who qualify for extra social assistance through the MDPCP program (i.e., those who qualify due to medical complexity and area deprivation index). Although we did not find other published literature focused specifically on Medicare patients at the state level, we found literature on programs focused on social needs screening among Medicaid populations in several states. Like Maryland practices, standardized measures and consistent approaches to measuring social needs have not been adopted or required in many states [ 12 , 13 , 14 ]. Further, a high percentage of the Maryland practices reported using home grown and standardized screening tools with additional questions to meet the practices’ needs. While the ability to aggregate social needs data across care settings can be challenging with different screeners, there is national movement to harmonize domains across various social risk factor screeners through the Gravity Project and the Office of the National Coordinator [ 12 , 15 ]. Notably, CMS has mandated social needs reporting in the inpatient setting beginning January 2024 for five specific domains, but has not specified a single tool or set of tools given that while there are some validated subsets of questions (e.g., Hunger Vital Signs), there is currently no gold standard tool [ 16 ]. Potential hurdles in requiring specific tools may include limitations on EHR technology, referral processes, and provider or staff level comfort and training in asking specific questions. Furthermore, implementing screening without supports for training the staff on trauma-informed approaches and how to respond to identified needs has the potential to cause more harm than benefit to patients. Thus, toolkits established by various professional societies and public health societies may be useful to determine which tools are most appropriate for a given practice and how to integrate them into care where practices have not yet started screening or encounter challenges [ 17 , 18 , 19 ].

Regarding practices with a hospital affiliation being more likely to screen a targeted population, one possibility is that practices affiliated with hospitals may have access to additional resources and supports that facilitate targeted screening efforts. Hospitals often have established practices including social risk factor screening for targeted subpopulations to address costly hospital readmissions, which may encourage affiliated practices to deliver more targeted screening practices. While it is unclear why small or medium-sized practices were more likely to screen all patients than a sub-population, it may have to do with more autonomy in workflow process, less customization of the EHR to target sub-populations, or differences in staffing and provider to patient ratios. While we cannot explain these differences from the survey alone, findings suggest that the size and affiliation of practices play a role in their screening practices, highlighting the importance of considering practice characteristics when designing specific supportive interventions or policies aimed at increasing screening rates.

It is important to highlight that MDPCP practices have achieved impressive levels of social needs screening and demographic data collection implementation. This success could be attributed largely to the program’s requirements and incentives to screen beneficiaries for social needs and collect demographic information. Additionally, the program provides technical support and resources to meet these requirements and to stand up social needs screening workflows if not already in place. By joining MDPCP, participating practices have demonstrated a commitment to advanced primary care, further indicating MDPCP participation may be associated with higher uptake of these workflows, as opposed to primary care practices who do not participate in similar value-based programs. Other states considering such programs may look to some of these supports when rolling out new requirements or incentives.

While the findings highlight the high level of social needs screening and demographic data collection, challenges in addressing identified needs may also be due to various factors including complexity of workflows and staffing, patients with social needs declining assistance, or limited local resource availability [ 20 ]. Previous research suggests patients may decline social needs assistance in healthcare settings if they do not feel like they need help, are confused about what is offered, are not confident that the assistance would be helpful, have experienced previous negative experiences, or feel fear and mistrust related to disclosing personal information [ 8 ]. In areas that posed the greatest referral challenges, policy efforts may be needed to deliver services and bridge the gaps to access. For example, the challenge of addressing housing needs is not newly identified; previous literature has shown increasing costs and declining supply have contributed to national housing availability and affordability challenges [ 21 , 22 ]. Medication cost continues to be a major problem cited in the literature, especially for older populations with a higher incidence of chronic diseases [ 23 , 24 ]. Financial strain among individuals often poses a challenge as financial needs fluctuate frequently, and changes can be dramatic; further, these changing needs over time are often not resolved by a one-time intervention and require long-term involvements [ 11 ]. Though research on the effects of internet access and health outcomes is still emerging, literature suggests investment in digital infrastructure by federal, state, and local governments is needed for further development of the internet as a means of addressing long-standing inequality in health [ 25 , 26 ]. While food insecurity and transportation were top needs prioritized within MDPCP practices, they did not present the same level of challenge to practices, perhaps due to wider availability of resources, partnerships, and supports such as transportation vouchers.

Although addressing connection to resources continues to be a challenge for practices, there are opportunities to leverage information from social needs screenings and demographic data collection in several other ways to improve care. Aggregate screening and demographic data can be used for quality improvement initiatives within primary care practices by analyzing trends and patterns in social needs data to help practices identify areas of unmet need, track outcomes, and update protocols for screening and referral processes. Additionally, data can be used to advocate for policy changes to address systemic issues affecting patients’ health outcomes. However, challenges in utilizing information from social needs screening and demographic data collection may still exist due to limited resources and capacity and lack of provider awareness and training availability.

Increased collection of detailed demographic data, particularly regarding sexual orientation, education level, and disability status presents an opportunity for improvement in primary care. Furthermore, collecting detailed demographic information can better allow practices to understand the need for targeted educational materials, track quality indicators, and address challenges faced by historically marginalized populations [ 26 , 27 ]. Still, even with good data collection approaches, some practices do not have the infrastructure or resources to analyze data to assess disparities in care or outcomes.

This study's strengths lie in its comprehensive analysis of a diverse range of primary care practices across Maryland. The inclusion of 507 practices with variations in size, location, and demographics enhances the representativeness of the findings and improves the generalizability of the results to a broader population. Consequently, the findings derived from studying a large population can contribute to a stronger evidence base for decision-making in healthcare and support the development of effective interventions and policies. A limitation of the study is the reliance on self-report, which may depend on the participants’ perspectives. Additionally, MDPCP practices meet eligibility criteria and voluntarily select to join the program, so these practices may be better equipped to join a value-based program that includes requirements or incentives to screen for social needs. Despite the limitations, our findings are novel in that few published studies highlight current practices at scale on social risk factor screening and referral in outpatient primary care settings for adults. Future research is warranted to show what strategies effectively increase uptake and drive meaningful change in social-needs responsive healthcare delivery.

MDPCP practices have demonstrated widespread adoption of social risk factor screenings and needs prioritization. While practices have implemented strategies to link patients to resources to address needs, challenges remain with providing social needs resources to beneficiaries from the primary care setting. Additionally, there is room for improvement in collecting certain demographic data fields within primary care practices. As the present analysis was based on cross-sectional data, future studies are needed to understand how to effect change in implementing or scaling social risk factor screening and detailed demographic data collection at the practice level. Additionally, future work is needed to understand how care is adjusted in response to identified social needs and how that impacts outcomes at the patient level.

Availability of data and materials

To access the datasets examined in this study, interested parties must follow the procedure outlined by the CMS. Requests should be submitted through the CMS website (cms.gov), and any queries can be directed to [email protected].

Abbreviations

Maryland Primary Care Program

Care Transformation Requirements

Center for Medicare and Medicaid Innovation

Centers for Medicare and Medicaid Services

Electronic Health Record

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This study was supported by the Centers for Disease Control and Prevention’s National Initiative to Address COVID-19 Health Disparities Among Populations at High-Risk and Underserved, Including Racial and Ethnic Minority Populations and Rural Communities grant number OT21-2103 through the Maryland Department of Health.

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CMS and HA analyzed and interpreted the data and drafted the manuscript. MS, SK, AM, RG, EG, and JB contributed to revising the manuscript. All authors approved the version to be published and agreed to be accountable for the accuracy and integrity of the data.

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Starling, C.M., Smith, M., Kazi, S. et al. Understanding social needs screening and demographic data collection in primary care practices serving Maryland Medicare patients. BMC Health Serv Res 24 , 448 (2024). https://doi.org/10.1186/s12913-024-10948-7

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Qualitative Research and its Uses in Health Care

Although relatively uncommon in health care research, qualitative research is now receiving recognition and is increasingly used in health care research with social and cultural dimensions. Unlike quantitative research, which is deductive and tends to analyze phenomena in terms of trends and frequencies, qualitative research seeks to determine the meaning of a phenomenon through description. It aims to develop concepts that aid in the understanding of natural phenomena with emphasis on the meaning, experiences and views of the participants. Differences among qualitative researchers exist on matters of ontology, epistemology, data collection methods and methods of evaluation. The aim of this article is not to act as a practical guide on how to conduct qualitative research, but is an attempt to give an introduction to qualitative research methods and their use in health-related research.

Q ualitative research is defined as an umbrella term covering an array of interpretative techniques which seek to describe, decode, translate and otherwise come to terms with the meaning, not the frequency, of certain more or less naturally occurring phenomena in the social world. 1 , 2

As a method of inquiry, it was first used by sociologists and anthropologists in the early twentieth century, although it existed much earlier than that in its non-structural form. Researchers studied cultures and groups in their own and foreign settings and told stories of their experience long before then. In the 1920s and 1930s, social anthropologists and sociologists implemented a more focused approach compared to the old unsystematic and journalistic style used in those days. Since the 1960s, qualitative research has experienced a steady growth starting with the development of grounded theory and new publications in ethnography. 3 , 4 The number of books, articles and papers related to qualitative research has increased tremendously during the past 20 years and more researchers, including health-related professionals, have moved to a more qualitative paradigm adapting and modifying these approaches to the study needs of their own areas. 4

Since qualitative research does not aim to enumerate, it is sometimes viewed as the exact opposite to quantitative methods and the two methods are frequently presented as antagonists. Quantitative research is based on structure and uses experiments and surveys as methods. In addition, it is deductive in nature and uses statistical sampling methods. In contrast, qualitative research is described as an action research using observation and interview methods. It is inductive in nature and depends on the purposeful selection of participants. Whereas quantitative researchers use reliability as a way of verification, qualitative researchers use validity. Recently, there has been a growing recognition that the quantitative-qualitative debate and distinction is unnecessary and that it would be more fruitful for the relation between the two methods to be complementary and overlapping rather than exclusive. 6 In fact, neither qualitative nor quantitative research is superior to the other; there are weaknesses and strengths in each method. Qualitative and quantitative research methods can indeed be seen as complementary and both are necessary to provide an understanding of a phenomenon.

Several researchers have argued that the research questions and the phenomenon under investigation should determine the methodology to used. 7 , 8 , 9 The crucial question, therefore, is not “what is the best research method?” but “what is the best research method for answering this question most effectively and efficiently?” 10 So, while qualitative and quantitative research may well investigate similar topics, each will address a different type of question. Holman sums up this position: “true understanding in medicine cannot be achieved without adding qualitative methods to the research arsenal”. 11

Traditional quantitative methods, such as randomised controlled trials, are the appropriate means of testing, for example, the effect of an intervention or a treatment, while a qualitative exploration of beliefs and understandings is needed to find out why the results of research are often not implemented in clinical practice. The aim of qualitative research is to develop concepts that can help us understand social phenomena in natural settings, giving emphasis on the meanings, experiences and views of the participants. 10

Qualitative research methods are the most suitable for this approach because of their emphasis on people’s lived experience. They are considered to be well suited for locating the meanings that people place on the events, processes, and structures of their lives and their perceptions, presuppositions and assumptions. 5 In his advice to graduate students, Patton lists a number of conditions that are suitable for a qualitative study. These include: questions about people’s experiences; inquiry into the meanings people make of their experiences; studying a person in the context of her or his social/interpersonal environment and research where it is difficult to develop a standardised instrument due to the lack of knowledge on the phenomenon. 12

ARGUMENTS FOR AND AGAINST QUALITATIVE METHODS

There are major differences of opinions among qualitative researchers on matters of ontology and epistemology as well as the methods to be used and criteria of evaluation. There are also disagreements about the nature, purpose, status and practice of its methods. A large number of authors take a predominantly method-based approach; authors such as Miles and Huberman 5 and Patton 12 put emphasis on data collection techniques. Another approach is to classify qualitative research according to research traditions, i.e. whether phenomenological, grounded theory or ethnography, amongst others. Authors such as Creswel 9 and Denzin and Lincolin 3 prefer this approach, which has the advantage of being based on systematisation of knowledge providing a sense of order and orientation. On the other hand, it has the disadvantage of oversimplification, ignoring the issues of the research question and conceptual frameworks used and the way these issues can shape the research process and the findings. 13 In addition, some researchers have decided to classify qualitative research according to the research question or the method of analysis.

Although the majority of qualitative researchers stress that qualitative research is inductive in nature, in contrast to quantitative research which is deductive, there are qualitative researchers who argue that both can be used for different purposes and at different times, and that qualitative research can be done in a deductive way where prior assumptions are tested on new cases. 14 Retroduction, which is defined as the movement backward and forward between theory and data or the combination of deduction and induction, is said to be a characteristic of qualitative research. 11 The degree of deduction or induction and which one follows the other depends on the research question. 12 .

Guba and Lincoln 15 used the term “emergent design” to describe a qualitative study design that emerges as the study progresses in response to the researcher’s early observations. There are also qualitative studies in health care that base their research questions on the results of prior literature of quantitative studies on the subject. 16 , 17 While the research questions in these studies were relatively precise, the method used was flexible.

Miles and Huberman 5 state that no study conforms exactly to a standard methodology and that the researcher bends the methodology to the peculiarities of the study. According to Creswell, 9 traditions of inquiry used “need not be pure, and one might mix procedures from several”. Mixing approaches and procedures is encouraged by some authors and regarded as a creative approach to qualitative research. 12

Studies using qualitative research in health care have been criticised for the misguided separation of method from theory and of technique from the conceptual underpinnings. 18 However, qualitative health researchers respond by stating that the choice of method and how it is used can perfectly well be matched to what is being studied rather than to the methodological leanings of the researcher. 10 It has been suggested that incorporating qualitative research method experts into health research teams enriches research and ensures that the right methodology is used for answering the right questions. Finally, using qualitative methods in health-related research has resulted in more insight into health professionals’ perceptions of lay participation in care and identification of barriers to changing healthcare practice.

QUALITATIVE RESEARCH APPROACHES

Grounded theory, phenomenology and ethnography are three approaches used in qualitative research. Grounded theory approach is a commonly used qualitative method in the social sciences to inductively generate or discover a theory out of the data. 9 Phenomenology and ethnography are more commonly used qualitative approaches in health care and will be highlighted below.

PHENOMENOLOGY

One of the major strengths of qualitative research is its emphasis upon understanding the phenomenon of interest holistically and in its context. The term phenomenology is popular and widely embraced, but its meaning has become confusing and faint. Different researchers refer to phenomenology differently. It can refer to an inquiry paradigm, an interpretive theory, a philosophy, an analytical perspective, a major qualitative research tradition or a research method framework. 12

In spite of the differences, all of these approaches share the focus of phenomenology, which is exploring how human beings make sense of experience and the meaning they give to these experiences. Phenomenology is being used in the social and human sciences including sociology, education, psychology, nursing and health sciences. 9

Phenomenologists are interested in how people put together the phenomena they experience in such a way as to make sense of the world and develop a worldview. They assume commonality in human experience and focus on meaning-making as the essence of human experience. The essence is the core meaning mutually understood through a phenomenon commonly experienced. 12 The phenomenon under study may be emotions, relationships, a programme, an organisation or a culture. 12 Bracketing is one of the central ideas in phenomenology. It means that the researcher has to set aside all of his prejudgments and his previous experience about the phenomena and approach the field with an open mind, imagination and intuition. Although important, bracketing is often said to be a difficult task. 9

Patton 12 describes the difference between conducting a phenomenological study and using a phenomenological perspective to a study. He argues that, “one can employ a general phenomenological perspective to elucidate the importance of using methods that capture people’s experience of the world without conducting a phenomenological study that focuses on the essence of shared experience”.

ETHNOGRAPHY

In ethnography, the researcher studies the structure and function of a group of people. An example of a structure or configuration is the kinship, while the function refers to patterns of relationships affecting and regulating behaviour. 9 The aim of ethnographic studies is to give a holistic picture of the social group studied, attempting to describe aspects of the cultural and social system of that particular group. These aspects could be the group history, religion, economy, politics or environment.

Data collection methods vary in ethnographic studies with observation and interviews being the most popular methods. Although some authors expressed concern that anthropological methods may be misused or applied superficially by the medical profession, 19 others, however, expressed the need for acknowledging and incorporating ethnographic methods in health care research. 20 Savage 19 explains that today the term ethnography can be applied to any small-scale social research carried out in everyday settings and uses several methods evolving in design and focusing on an individual’s meanings and explanations. In health care, ethnography has been used in topics related to health beliefs and practices, allowing these issues to be viewed in the context in which they occur and therefore helping broaden the understanding of behaviours related to health and illness. 20

In addition, there has been an increase in the amount of cross-cultural research and a change in the form of this research. Recently, more short-term ethnographic and cross-cultural studies have been undertaken, for example, studies sponsored by international development agencies or student exchange projects. 12

QUALITATIVE RESEARCH INSTRUMENTS

Qualitative research instruments used for data collection include interviews, observations, and analysis of documents. Interviews are the most common techniques used to gather research information. There are three types of interviews: structured, semi-structured and unstructured, described in some books as structured, informed and guided, respectively. 13

The semi-structured interview is more commonly used in health care-related qualitative research. Such an interview is characteristically based on a flexible topic guide that provides a loose structure of open-ended questions to explore experiences and attitudes. It has the advantage of great flexibility, enabling the researcher to enter new areas and produce richer data. In addition, it helps the researcher to develop a rapport with the informants. Semi-structured interviews elicit people’s own views and descriptions and have the benefit of uncovering issues or concerns that have not been anticipated by the researcher. 6 They are commonly used when the aim is to gain information on the perspectives, understandings and meanings constructed by people regarding the events and experiences of their lives. However, this type of interviewing is claimed to reduce the researcher’s control over the interview situation and take a longer time to conduct and analyse, in addition to the difficulties of the analysis process. 21

In health care, interviews are the appropriate tool to be used if the research is concerned with interpersonal aspects of care or if the available evidence is limited. 6

Another qualitative research instrument that can be used in health care research is the focus group. Focus group interviews have the advantage of being more time efficient as more people can be interviewed for the same amount of time. They also provide a richer source of data. On the other hand, focus group interviews tend to document the ‘public’ rather than the ‘private’ views of the individuals. In addition some people do not interview well in-group situations. 13

THE USE OF THE INTERVIEW GUIDE

Some qualitative researchers are reluctant to plan a design of their study in advance of the data collection. They argue that the phenomenon studied must first be discovered and they describe their design as emergent. However, increasingly more qualitative researchers appear ready to define a research question and develop an interview guide prior to starting the data collection. 11 Patton defines an interview guide as a series of topics or broad interview questions which the researcher is free to explore and probe with the interviewee. 12 The advantage of an interview guide is that it helps the interviewer pursue the same basic lines of inquiry with each person interviewed and manage the interviews in a more systematic and comprehensive way. The findings of earlier work are increasingly being used as a facilitator for further research. However, concepts drawn from earlier work are supposed to be held lightly and to be subject to reformulation or rejection by the researcher especially as the study goes on and the research progresses. 11 The extent to which such a flexibility of design is important will vary depending on the topic and the aim of the study.

Sampling strategies in qualitative research are largely determined by the purpose of the study. Statistical representativeness is not considered as a prime requirement in qualitative research and is not normally sought. Furthermore, qualitative data collection is more time consuming and expensive, which makes the use of a probability sample impractical. 6 The aim of sampling in qualitative research is to identify specific groups of people who hold characteristics or live in circumstances relevant to the phenomena being studied. In this way, identified informants are expected to enable enriched exploration of attitudes and aspects of behaviour relevant to the research. 10 Two types of samples used in qualitative research, maximum variation and homogenous samples, are explained below.

According to Patton, 12 maximum variation sampling is where the researcher attempts to study a phenomenon by seeking out settings or persons that represent the greatest differences in that phenomenon. A maximum variation sample documents diverse variations and identifies important common patterns by representing diverse cases to develop fully multiple perspectives about the cases. 9 This means that the participants are sampled based on particular predetermined criteria in order to cover a range of constituencies, such as different age, cultural background or class. 6

Similarly, the researcher can select the setting of the data collection on the basis that it is sufficiently similar to other settings in which generalisation is sought. This way the researcher is demonstrating the possibility that the setting studied is representative of the population studied. 2

In homogeneous sampling, the researcher chooses a small homogenous sample with the purpose of describing some particular subgroups in depth. 12

The sample size in qualitative research is not determined by fixed rules, but by factors such as the depth and duration of the interview and what is feasible for a single interviewer. 22 Although it is theoretically possible to carry out qualitative research on large samples, qualitative researchers find themselves obliged by time and resource limits to trade breadth for depth. 11 The sample size for interview studies is usually much smaller than those of a quantitative research, usually not exceeding 50 participants, although this can vary with the research question asked. 6 Patton 12 states, “there are no rules for sample size in qualitative inquiry”. In other words, sample size depends on the aim of the study and what is possible, given the time and resources available.

ANALYSING QUALITATIVE RESEARCH

Although there are plenty of guidelines for analysing qualitative research, applying these guidelines requires judgment and creativity because each qualitative study is unique. 12 A researcher might also be confused by the different terms used by qualitative researchers when describing analysis. Analysis might be described as interpretation, making sense of data, or transforming data. Analysis is sometimes presented to indicate different procedures based on language, theory or what is described as interpretive/descriptive analysis. 11 However, overlap can take place between these different methods and a researcher might decide to use a method of analysis that is based on language, such as symbolic interactionist, while using grounded theory to develop a theory at the same time. Most of the analytical approaches to qualitative research in health care are ‘generic’ and are not labelled within one of the specific traditions of qualitative research. A common approach in most of these studies is general and inductive in nature, but does not comply with the very systematic and rigorous inductive approach of grounded theory. In addition, it has been described that many researchers use a simple two-level analysis scheme followed by a more specific level. This means that the researcher can initiate the analysis based on the conceptual framework used in order to produce more inductive data, and the coding moves from the descriptive to the more interpretative and inferential codes. 5

COMPUTER USE IN QUALITATIVE DATA ANALYSIS

Qualitative research studies typically produce very large amount of data that needs to be managed efficiently. Computer packages can improve the efficiency of data management. 11 Computer programs provide a way of storing and retrieving material. They are therefore useful in locating cases, statements, phrases or even words, thereby replacing the tedious and time-consuming process of “cutting and pasting” and “colour coding”. The use of computer packages, however, is claimed to distance the analyst from the data, 11 and may take the place of a close and careful analysis. Using a computer programme can lead to quantitative analysis instead of qualitative, for example, counting occurrences, giving more weight to more frequent events, and ignoring isolated incidences. 23 In addition, computer programmes are said to fix and label categories during the analysis process and the researcher may be reluctant to change these categories. 9 Furthermore, the researcher is required to learn the computer programme, which may add to the time and effort he or she will need to spend on the research project. The researcher also has to be aware of the limitations of computer programmes. While computer packages can help with the intensive process of analysis and the management of large data sets, they are not a substitute for “immersion” in the data, and thorough knowledge that can enable the researcher to make comparisons, identify patterns and develop interpretations. 6 There are different packages available: Ethnograph, Atlas and NUD.IST are the mostly used. QSR NVivo is a new product developed by the makers of NUD.IST and is user-friendlier, more suitable for individual research projects and more visually attractive than previous packages.

THE ROLE OF THE RESEARCHER IN QUALITATIVE RESEARCH

Patton 12 states that, “the human element in qualitative research is both its strength and weakness”. It is considered a point of strength because it allows human insight and experience to develop new understandings of the world, and a point of weakness because it depends heavily on the researcher’s skills, creativity, training and intellect. Qualitative methods depend on both critical and creative thinking and the balance between the two in conducting the study and interpreting its results. The role of the researcher is approached differently according to the type of research tradition used. A phenomenologist researcher is required to bracket his/her own assumptions when collecting data. On the other hand, in an ethnographic study, the effect of the researcher on the interview and the interaction is seen as inevitable and important in shaping the results of the study.

Although practising clinicians routinely interview patients during their clinical work, interviewing is a well-established technique in sociology and related disciplines. One of the differences between clinical and research-aimed interviews lies in their different purposes. The usual aim of the clinical interview is to fit the patient’s problem into the appropriate medical category for diagnosis and management. On the other hand, the aim of a qualitative research interview is to discover the interviewee’s own meaning and avoid prior assumptions and preset categories. 22 Having said that, there are general skills in clinical interviewing that can be useful, such as listening and observation. A good level of self-awareness is necessary in the researcher in order to reduce possible biases.

Researchers in qualitative research need to consider how they are perceived by interviewees and the effect of features related to the researcher, such as class, race, and sex on the interview. This question is more important if the interviewee knows that the interviewer is a doctor. It has been described that a patient, or someone who is likely to be become one, may give what he or she thinks is a desirable response, thinking that the doctor will be pleased.

RIGOUR IN QUALITATIVE RESEARCH

Health field research is generally quantitative and based on biomedical traditions and experimental methods. In this field, qualitative research is criticized for being subject to researcher bias and for lacking reproducibility and generalisability. 10 Researchers presenting their qualitative work in health-related research are partly responsible for this view. Many qualitative researchers neglect the importance of giving an adequate description of their theoretical concepts and methods used in their research. A systematic research method is also essential when conducting qualitative research. Rigour in qualitative research includes procedures taken at different stages of the research process including during data collection and analysis. Several procedures have been described to increase rigour in qualitative research. For example, triangulation is commonly used as a way of validating of data.

TRIANGULATION

In triangulation, the researcher uses multiple methods, sources, researchers or theories to provide evidence that strengthens his or her study. Triangulation provides different ways of looking at the same phenomenon and adds credibility and confidence in the conclusions drawn from the study. There are two main types of triangulation, triangulation of sources and analyst triangulation. Patton 12 defines triangulation of sources as “checking out the consistency of different data sources within the same method”. When using this type of triangulation, the researcher compares the perspectives of people from different points of view. For example, studies in programme evaluation might compare the views of staff, clients or funding bodies. 12 Studies in health care have used this method of verification to study the accounts of doctors, patients, and managers in order to identify similarities and differences in views. An example is the study of patients’ versus doctors’ agendas in general practice. 23 Both similarities and differences from different sources, when given reasonable explanation, could contribute significantly to the credibility of the findings. Triangulation with multiple analysts can also be used as a method of verification. It is defined as “having two or more persons independently analyse the same qualitative data and compare their findings”. 12

QUALITATIVE RESEARCH IN HEALTH CARE MANAGEMENT

Recently, there has been a greater acceptance of the qualitative approach, even as a stand-alone method, in health care research. Institutions that control funding for medical research have developed ethical guidelines for assessing qualitative studies which indicates formal acceptance of this form of research within an area previously dominated by quantitative methods. 13 More qualitative research articles are published in health-related journals, in addition to a new qualitative research journal (Qualitative Health Research).

Quality of health care is one of the areas where qualitative methods can be used. The concept of quality in health care is multidimensional and multifaceted and some of the questions asked related to the quality of care or services may not be acquiescent to quantitative methods. 6 Qualitative research offers a variety of methods to be used for identifying what is really important to both patients and carers. It can also be used to identify and detect obstacles to change and the reasons why improvement does not occur. 6 It is therefore an essential component of health services research because it enables us to reach areas not amenable to quantitative research, for example, lay and professional health beliefs. In addition, qualitative description can be a prerequisite of quantitative research, particularly in areas that have received little previous investigation.

Qualitative research is widely used to study issues related to doctor-patient interaction especially in general practice. Studies concerning patients’ versus doctors’ agendas in general practice and general practitioners perceptions of effective health care are examples. 23 , 24 Recently there have been more studies concentrating on patients’ own perceptions and views regarding their health and health care services, for example a study on women’s views on the impact of operative delivery in the second stage of labour. 25 Another example is the study on middle-aged person’s experience of living with severe heart failure. 26

Another area where qualitative research is being used in health care is to identify obstacles and barriers to practice change by exploring the reasons behind certain behaviours. A good example of this is the study of patients’ decisions about whether or not to take anti-hypertensive drugs. 27 There are similar studies on issues such as the use of antibiotics in general practice and patient compliance.

In addition to issues related to the patients’ perception, some qualitative studies concentrated on factors fostering the doctor’s motivation and the effect of doctors’ social life and culture, in addition to issues related to the doctor’s own health. Examples are the study by Dumelow et al. 28 on the relation between a career and family life for English hospital consultants. Another example is a study aimed at exploring general practitioners’ perceptions of the effects of their profession and training on their attitudes to illness in themselves and colleagues. 29

Qualitative work can help in identifying cultural and social factors that affect health care positively or negatively. Such information can be helpful in improving service delivery. 6 Studies on patients from ethnic minorities have identified administrative and language barriers that affected health care and shed light on some of the beliefs and behaviours of these patients that might have affected help seeking and compliance. Good examples are the studies by Bush et al. 30 exploring the influences on smoking in Bangladeshi and Pakistani adults in the UK, and the multi-centre cross-cultural postnatal depression study. 31

There has been an increasing interest and use of qualitative research methods in primary health care and general practice articles. Britten 32 states that “the nature of general practice is such that a variety of research methods are needed to explore all its intricacies” He adds that qualitative methods can enrich research in general practice by opening up areas not amenable to quantitative methods, topics such as patient satisfaction, doctor-patient interaction, in addition to identifying and explaining attitudes, beliefs and behaviour. In addition, qualitative research has been used in the assessment of new technology methods used in health care. For example, the studies on the implementation of the National Health System information technology programme in the UK. 11 , 33

Qualitative research methods are receiving an increasing recognition in health care related research. The use of qualitative research in health care enables researchers to answer questions that may not be easily answered by quantitative methods. Moreover, it seeks to understand the phenomenon under study in the context of the culture or the setting in which it has been studied, therefore, aiding in the development of new research instruments, such as questionnaires that are more culturally acceptable. However, because health care related research has, for decades, been based on quantitative methods, the introduction of a new method requires researchers in health care who attempt to use it, to have a thorough understanding of its theoretical basis, methodology and evaluation techniques.

Acknowledgments

I would like to thank Sultan Qaboos University, Oman, for granting me a scholarship to do my PhD at the University of Nottingham, UK. I am also grateful to my PhD supervisor, Dr Margaret Oates, for her guidance and support.

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This paper is in the following e-collection/theme issue:

Published on 11.4.2024 in Vol 26 (2024)

Patients’ Experiences With Digitalization in the Health Care System: Qualitative Interview Study

Authors of this article:

Original Paper

• Christian Gybel Jensen 1 * , MA   ; 
• Frederik Gybel Jensen 1 * , MA   ; 
• Mia Ingerslev Loft 1, 2 * , MSc, PhD  

1 Department of Neurology, Rigshospitalet, Copenhagen, Denmark

2 Institute for People and Technology, Roskilde University, Roskilde, Denmark

*all authors contributed equally

Corresponding Author:

Mia Ingerslev Loft, MSc, PhD

Department of Neurology

Rigshospitalet

Inge Lehmanns Vej 8

Phone: 45 35457076

Email: [email protected]

Background: The digitalization of public and health sectors worldwide is fundamentally changing health systems. With the implementation of digital health services in health institutions, a focus on digital health literacy and the use of digital health services have become more evident. In Denmark, public institutions use digital tools for different purposes, aiming to create a universal public digital sector for everyone. However, this digitalization risks reducing equity in health and further marginalizing citizens who are disadvantaged. Therefore, more knowledge is needed regarding patients’ digital practices and experiences with digital health services.

Objective: This study aims to examine digital practices and experiences with public digital health services and digital tools from the perspective of patients in the neurology field and address the following research questions: (1) How do patients use digital services and digital tools? (2) How do they experience them?

Methods: We used a qualitative design with a hermeneutic approach. We conducted 31 semistructured interviews with patients who were hospitalized or formerly hospitalized at the department of neurology in a hospital in Denmark. The interviews were audio recorded and subsequently transcribed. The text from each transcribed interview was analyzed using manifest content analysis.

Results: The analysis provided insights into 4 different categories regarding digital practices and experiences of using digital tools and services in health care systems: social resources as a digital lifeline, possessing the necessary capabilities, big feelings as facilitators or barriers, and life without digital tools. Our findings show that digital tools were experienced differently, and specific conditions were important for the possibility of engaging in digital practices, including having access to social resources; possessing physical, cognitive, and communicative capabilities; and feeling motivated, secure, and comfortable. These prerequisites were necessary for participants to have positive experiences using digital tools in the health care system. Those who did not have these prerequisites experienced challenges and, in some cases, felt left out.

Conclusions: Experiences with digital practices and digital health services are complex and multifaceted. Engagement in digital practices for the examined population requires access to continuous assistance from their social network. If patients do not meet requirements, digital health services can be experienced as exclusionary and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges. To ensure that digitalization does not create inequities in health, it is necessary for developers and institutions to be aware of the differences in digital health literacy, focus on simplifying communication with patients and next of kin, and find flexible solutions for citizens who are disadvantaged.

Introduction

In 2022, the fourth most googled question in Denmark was, “Why does MitID not work?” [ 1 ]. MitID (My ID) is a digital access tool that Danes use to enter several different private and public digital services, from bank accounts to mail from their municipality or the state. MitID is a part of many Danish citizens’ everyday lives because the public sector in Denmark is digitalized in many areas. In recent decades, digitalization has changed how governments and people interact and has demonstrated the potential to change the core functions of public sectors and delivery of public policies and services [ 2 ]. When public sectors worldwide become increasingly digitalized, this transformation extends to the public health sectors as well, and some studies argue that we are moving toward a “digital public health era” that is already impacting the health systems and will fundamentally change the future of health systems [ 3 ]. While health systems are becoming more digitalized, it is important that both patients and digitalized systems adapt to changes in accordance with each other. Digital practices of people can be understood as what people do with and through digital technologies and how people relate to technology [ 4 ]. Therefore, it is relevant to investigate digital practices and how patients perceive and experience their own use of digital tools and services, especially in relation to existing digital health services. In our study, we highlight a broad perspective on experiences with digital practices and particularly add insight into the challenges with digital practices faced by patients who have acute or chronic illness, with some of them also experiencing physical, communicative, or cognitive difficulties.

An international Organization for Economic Cooperation and Development report indicates that countries are digitalized to different extents and in different ways; however, this does not mean that countries do not share common challenges and insights into the implementation of digital services [ 2 ].

In its global Digital Government Index, Denmark is presented as one of the leading countries when it comes to public digitalization [ 2 ]. Recent statistics indicate that approximately 97% of Danish families have access to the internet at home [ 5 ]. The Danish health sector already offers many different digital services, including web-based delivery of medicine, e-consultations, patient-related outcome questionnaires, and seeking one’s own health journal or getting test results through; “Sundhed” [ 6 ] (the national health portal) and “Sundhedsjournalen” (the electronic patient record); or the apps “Medicinkortet” (the shared medication record), “Minlæge” (My Doctor, consisting of, eg, communication with the general practitioner), or “MinSP” (My Health Platform, consisting of, eg, communication with health care staff in hospitals) [ 6 - 8 ].

The Danish Digital Health Strategy from 2018 aims to create a coherent and user-friendly digital public sector for everyone [ 9 ], but statistics indicate that certain groups in society are not as digitalized as others. In particular, the older population uses digital services the least, with 5% of people aged 65 to 75 years and 18% of those aged 75 to 89 years having never used the internet in 2020 [ 5 ]. In parts of the literature, it has been problematized how the digitalization of the welfare state is related to the marginalization of older citizens who are socially disadvantaged [ 10 ]. However, statistics also indicate that the probability of using digital tools increases significantly as a person’s experience of using digital tools increases, regardless of their age or education level [ 5 ].

Understanding the digital practices of patients is important because they can use digital tools to engage with the health system and follow their own health course. Researching experiences with digital practices can be a way to better understand potential possibilities and barriers when patients use digital health services. With patients becoming more involved in their own health course and treatment, the importance of patients’ health literacy is being increasingly recognized [ 11 ]. The World Health Organization defines health literacy as the “achievement of a level of knowledge, personal skills and confidence to take action to improve personal and community health by changing personal lifestyles and living conditions” [ 12 ]. Furthermore, health literacy can be described as “a person’s knowledge and competencies to meet complex demands of health in modern society, ” and it is viewed as a critical step toward patient empowerment [ 11 , 12 ]. In a digitalized health care system, this also includes the knowledge, capabilities, and resources that individuals require to use and benefit from eHealth services, that is, “digital health literacy (eHealth literacy)” [ 13 ]. An eHealth literacy framework created by Norgaard et al [ 13 ] identified that different aspects, for example, the ability to process information and actively engage with digital services, can be viewed as important facets of digital health literacy. This argument is supported by studies that demonstrate how patients with cognitive and communicative challenges experience barriers to the use of digital tools and require different approaches in the design of digital solutions in the health sector [ 14 , 15 ]. Access to digital services and digital literacy is becoming increasingly important determinants of health, as people with digital literacy and access to digital services can facilitate improvement of health and involvement in their own health course [ 16 ].

The need for a better understanding of eHealth literacy and patients’ capabilities to meet public digital services’ demands as well as engage in their own health calls for a deeper investigation into digital practices and the use of digital tools and services from the perspective of patients with varying digital capabilities. Important focus areas to better understand digital practices and related challenges have already been highlighted in various studies. They indicate that social support, assessment of value in digital services, and systemic assessment of digital capabilities are important in the use and implementation of digital tools, and they call for better insight into complex experiences with digital services [ 13 , 17 , 18 ]. Therefore, we aimed to examine digital practices and experiences with public digital health services and digital tools from the perspective of patients, addressing the following research questions: how do patients use digital services and digital tools, and how do they experience them?

We aimed to investigate digital practices and experiences with digital health services and digital tools; therefore, we used a qualitative design and adopted a hermeneutic approach as the point of departure, which means including preexisting knowledge of digital practices but also providing room for new comprehension [ 19 ]. Our interpretive approach is underpinned by the philosophical hermeneutic approach by Gadamer et al [ 19 ], in which they described the interpretation process as a “hermeneutic circle,” where the researcher enters the interpretation process with an open mind and historical awareness of a phenomenon (preknowledge). We conducted semistructured interviews using an interview guide. This study followed the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist [ 20 ].

Setting and Participants

To gain a broad understanding of experiences with public digital health services, a purposive sampling strategy was used. All 31 participants were hospitalized or formerly hospitalized patients in a large neurological department in the capital of Denmark ( Table 1 ). We assessed whether including patients from the neurological field would give us a broad insight into the experiences of digital practices from different perspectives. The department consisted of, among others, 8 inpatient units covering, for example, acute neurology and stroke units, from which the patients were recruited. Patients admitted to a neurological department can have both acute and transient neurological diseases, such as infections in the brain, stroke, or blood clot in the brain from which they can recover completely or have persistent physical and mental difficulties, or experience chronic neurological and progressive disorders such as Parkinson disease and dementia. Some patients hospitalized in neurological care will have communicative and cognitive difficulties because of their neurological disorders. Nursing staff from the respective units helped the researchers (CGJ, FGJ, and MIL) identify patients who differed in terms of gender, age, and severity of neurological illness. Some patients (6/31, 19%) had language difficulties; however, a speech therapist assessed them as suitable participants. We excluded patients with severe cognitive difficulties and those who were not able to speak the Danish language. Including patients from the field of neurology provided an opportunity to study the experience of digital health practice from various perspectives. Hence, the sampling strategy enabled the identification and selection of information-rich participants relevant to this study [ 21 ], which is the aim of qualitative research. The participants were invited to participate by either the first (CGJ) or last author (MIL), and all invited participants (31/31, 100%) chose to participate.

All 31 participants were aged between 40 to 99 years, with an average age of 71.75 years ( Table 1 ). Out of the 31 participants, 10 (32%) had physical disabilities or had cognitive or communicative difficulties due to sequela in relation to neurological illness or other physical conditions.

Data Collection

The 31 patient interviews were conducted over a 2-month period between September and November 2022. Of the 31 patients, 20 (65%) were interviewed face-to-face at the hospital in their patient room upon admission and 11 (35%) were interviewed on the phone after being discharged. The interviews had a mean length of 20.48 minutes.

We developed a semistructured interview guide ( Table 2 ). The interview questions were developed based on the research aim, findings from our preliminary covering of literature in the field presented in the Introduction section, and identified gaps that we needed to elaborate on to be able to answer our research question [ 22 ]. The semistructured interview guide was designed to support the development of a trusting relationship and ensure the relevance of the interviews’ content [ 22 ]. The questions served as a prompt for the participants and were further supported by questions such as “please tell me more” and “please elaborate” throughout the interview, both to heighten the level of detail and to verify our understanding of the issues at play. If the participant had cognitive or communicative difficulties, communication was supported using a method called Supported Communication for Adults with Aphasia [ 23 ] during the interview.

The interviews were performed by all authors (CGJ, FGJ, and MIL individually), who were skilled in conducting interviews and qualitative research. The interviewers are not part of daily clinical practice but are employed in the department of neurology from where the patients were recruited. All interviews were audio recorded and subsequently transcribed verbatim by all 3 authors individually.

a PRO: patient-related outcome.

Data Analysis

The text from each transcribed interview was analyzed using manifest content analysis, as described by Graneheim and Lundman [ 24 ]. Content analysis is a method of analyzing written, verbal, and visual communication in a systematic way [ 25 ]. Qualitative content analysis is a structured but nonlinear process that requires researchers to move back and forth between the original text and parts of the text during the analysis. Manifest analysis is the descriptive level at which the surface structure of the text central to the phenomenon and the research question is described. The analysis was conducted as a collaborative effort between the first (CGJ) and last authors (MIL); hence, in this inductive circular process, to achieve consistency in the interpretation of the text, there was continued discussion and reflection between the researchers. The transcriptions were initially read several times to gain a sense of the whole context, and we analyzed each interview. The text was initially divided into domains that reflected the lowest degree of interpretation, as a rough structure was created in which the text had a specific area in common. The structure roughly reflected the interview guide’s themes, as guided by Graneheim and Lundman [ 24 ]. Thereafter, the text was divided into meaning units, condensed into text-near descriptions, and then abstracted and labeled further with codes. The codes were categorized based on similarities and differences. During this process, we discussed the findings to reach a consensus on the content, resulting in the final 4 categories presented in this paper.

Ethical Considerations

The interviewees received oral and written information about the study and its voluntary nature before the interviews. Written informed consent was obtained from all participants. Participants were able to opt of the study at any time. Data were anonymized and stored electronically on locked and secured servers. The Ethics Committee of the Capitol Region in Denmark was contacted before the start of the study. This study was registered and approved by the ethics committee and registered under the Danish Data Protection Agency (number P2021-839). Furthermore, the ethical principles of the Declaration of Helsinki were followed for this study.

The analysis provided insights into 4 different categories regarding digital practices and experiences of using digital tools and services in health care systems: social resources as a digital lifeline, possessing the necessary capabilities, big feelings as facilitators or barriers, and life without digital tools.

Social Resources as a Digital Lifeline

Throughout the analysis, it became evident that access to both material and social resources was of great importance when using digital tools. Most participants already possessed and had easy access to a computer, smartphone, or tablet. The few participants who did not own the necessary digital tools told us that they did not have the skills needed to use these tools. For these participants, the lack of material resources was tied particularly to a lack of knowledge and know-how, as they expressed that they would not know where to start after buying a computer—how to set it up, connect it to the internet, and use its many systems.

However, possessing the necessary material resources did not mean that the participants possessed the knowledge and skill to use digital tools. Furthermore, access to material resources was also a question of having access to assistance when needed. Some participants who had access to a computer, smartphone, and tablet and knew how to use these tools still had to obtain help when setting up hardware, updating software, or getting a new device. These participants were confident in their own ability to use digital devices but also relied on family, friends, and neighbors in their everyday use of these tools. Certain participants were explicitly aware of their own use of social resources when expressing their thoughts on digital services in health care systems:

I think it is a blessing and a curse. I think it is both. I would say that if I did not have someone around me in my family who was almost born into the digital world, then I think I would be in trouble. But I feel sorry for those who do not have that opportunity, and I know quite a few who do not. They get upset, and it’s really frustrating. [Woman, age 82 years]

The participants’ use of social resources indicates that learning skills and using digital tools are not solely individual tasks but rather continuously involve engagement with other people, particularly whenever a new unforeseen problem arises or when the participants want a deeper understanding of the tools they are using:

If tomorrow I have to get a new ipad...and it was like that when I got this one, then I had to get XXX to come and help me move stuff and he was sweet to help with all the practical stuff. I think I would have cursed a couple of times (if he hadn’t been there), but he is always helpful, but at the same time he is also pedagogic so I hope that next time he showed me something I will be able to do it. [Man, age 71 years]

For some participants, obtaining assistance from a more experienced family member was experienced as an opportunity to learn, whereas for other participants, their use of public digital services was even tied directly to assistance from a spouse or family member:

My wife, she has access to mine, so if something comes up, she can just go in and read, and we can talk about it afterwards what (it is). [Man, age 85 years]

The participants used social resources to navigate digital systems and understand and interpret communication from the health care system through digital devices. Another example of this was the participants who needed assistance to find, answer, and understand questionnaires from the health care department. Furthermore, social resources were viewed as a support system that made participants feel more comfortable and safer when operating digital tools. The social resources were particularly important when overcoming unforeseen and new challenges and when learning new skills related to the use of digital tools. Participants with physical, cognitive, and communicative challenges also explained how social resources were of great importance in their ability to use digital tools.

Possessing the Necessary Capabilities

The findings indicated that possessing the desire and knowing how to use digital tools are not always enough to engage with digital services successfully. Different health issues can carry consequences for motor skills and mobility. Some of these consequences were visibly affecting how our participants interacted with digital devices, and these challenges were somewhat easy to discover. However, our participants revealed hidden challenges that posed difficulties. In some specific cases, cognitive and communicative inabilities can make it difficult to use digital tools, and this might not always be clear until the individual tries to use a device’s more complex functions. An example of this is that some participants found it easy to turn on a computer and use it to write but difficult to go through security measures on digital services or interpret and understand digital language. Remembering passwords and logging on to systems created challenges, particularly for those experiencing health issues that directly affect memory and cognitive abilities, who expressed concerns about what they were able to do through digital tools:

I think it is very challenging because I would like to use it how I used to before my stroke; (I) wish that everything (digital skills) was transferred, but it just isn’t. [Man, age 80 years]

Despite these challenges, the participants demonstrated great interest in using digital tools, particularly regarding health care services and their own well-being. However, sometimes, the challenges that they experienced could not be conquered merely by motivation and good intentions. Another aspect of these challenges was the amount of extra time and energy that the participants had to spend on digital services. A patient diagnosed with Parkinson disease described how her symptoms created challenges that changed her digital practices:

Well it could for example be something like following a line in the device. And right now it is very limited what I can do with this (iPhone). Now I am almost only using it as a phone, and that is a little sad because I also like to text and stuff, but I also find that difficult (...) I think it is difficult to get an overview. [Woman, age 62 years]

Some participants said that after they were discharged from the hospital, they did not use the computer anymore because it was too difficult and too exhausting , which contributed to them giving up . Using digital tools already demanded a certain amount of concentration and awareness, and some diseases and health conditions affected these abilities further.

Big Feelings as Facilitators or Barriers

The findings revealed a wide range of digital practices in which digital tools were used as a communication device, as an entertainment device, and as a practical and informative tool for ordering medicine, booking consultations, asking health-related questions, or receiving email from public institutions. Despite these different digital practices, repeating patterns and arguments appeared when the participants were asked why they learned to use digital tools or wanted to improve their skills. A repeating argument was that they wanted to “follow the times, ” or as a participant who was still not satisfied with her digital skills stated:

We should not go against the future. [Woman, age 89 years]

The participants expressed a positive view of the technological developments and possibilities that digital devices offered, and they wanted to improve their knowledge and skills related to digital practice. For some participants, this was challenging, and they expressed frustration over how technological developments “moved too fast ,” but some participants interpreted these challenges as a way to “keep their mind sharp. ”

Another recurring pattern was that the participants expressed great interest in using digital services related to the health care system and other public institutions. The importance of being able to navigate digital services was explicitly clear when talking about finding test answers, written electronic messages, and questionnaires from the hospital or other public institutions. Keeping up with developments, communicating with public institutions, and taking an interest in their own health and well-being were described as good reasons to learn to use digital tools.

However, other aspects also affected these learning facilitators. Some participants felt alienated while using digital tools and described the practice as something related to feelings of anxiety, fear, and stupidity as well as something that demanded “a certain amount of courage. ” Some participants felt frustrated with the digital challenges they experienced, especially when the challenges were difficult to overcome because of their physical conditions:

I get sad because of it (digital challenges) and I get very frustrated and it takes a lot of time because I have difficulty seeing when I look away from the computer and have to turn back again to find out where I was and continue there (...) It pains me that I have to use so much time on it. [Man, age 71 years]

Fear of making mistakes, particularly when communicating with public institutions, for example, the health care system, was a common pattern. Another pattern was the fear of misinterpreting the sender and the need to ensure that the written electronic messages were actually from the described sender. Some participants felt that they were forced to learn about digital tools because they cared a lot about the services. Furthermore, fears of digital services replacing human interaction were a recurring concern among the participants. Despite these initial and recurring feelings, some participants learned how to navigate the digital services that they deemed relevant. Another recurring pattern in this learning process was repetition, the practice of digital skills, and consistent assistance from other people. One participant expressed the need to use the services often to remember the necessary skills:

Now I can figure it out because now I’ve had it shown 10 times. But then three months still pass... and then I think...how was it now? Then I get sweat on my forehead (feel nervous) and think; I’m not an idiot. [Woman, age 82 years]

For some participants, learning how to use digital tools demanded time and patience, as challenges had to be overcome more than once because they reappeared until the use of digital tools was more automatized into their everyday lives. Using digital tools and health services was viewed as easier and less stressful when part of everyday routines.

Life Without Digital Tools: Not a Free Choice

Even though some participants used digital tools daily, other participants expressed that it was “too late for them.” These participants did not view it as a free choice but as something they had to accept that they could not do. They wished that they could have learned it earlier in life but did not view it as a possibility in the future. Furthermore, they saw potential in digital services, including digital health care services, but they did not know exactly what services they were missing out on. Despite this lack of knowledge, they still felt sad about the position they were in. One participant expressed what she thought regarding the use of digital tools in public institutions:

Well, I feel alright about it, but it is very, very difficult for those of us who do not have it. Sometimes you can feel left out—outside of society. And when you do not have one of those (computers)...A reference is always made to w and w (www.) and then you can read on. But you cannot do that. [Woman, age 94 years]

The feeling of being left out of society was consistent among the participants who did not use digital tools. To them, digital systems seemed to provide unfair treatment based on something outside of their own power. Participants who were heavily affected by their medical conditions and could not use digital services also felt left out because they saw the advantages of using digital tools. Furthermore, a participant described the feelings connected to the use of digital tools in public institutions:

It is more annoying that it does not seem to work out in my favour. [Woman, age 62 years]

These statements indicated that it is possible for individuals to want to use digital tools and simultaneously find them too challenging. These participants were aware that there are consequences of not using digital tools, and that saddens them, as they feel like they are not receiving the same treatment as other people in society and the health care system.

Principal Findings

The insights from our findings demonstrated that our participants had different digital practices and different experiences with digital tools and services; however, the analysis also highlighted patterns related to how digital services and tools were used. Specific conditions were important for the possibility of digital practice, including having access to social resources; possessing the necessary capabilities; and feeling motivated, secure, and comfortable . These prerequisites were necessary to have positive experiences using digital tools in the health care system, although some participants who lived up to these prerequisites were still skeptical toward digital solutions. Others who did not live up to these prerequisites experienced challenges and even though they were aware of opportunities, this awareness made them feel left out. A few participants even viewed the digital tools as a threat to their participation in society. This supports the notion of Norgaard et al [ 13 ] that the attention paid to digital capability demands from eHealth systems is very important. Furthermore, our findings supported the argument of Hjeltholt and Papazu [ 17 ] that it is important to better understand experiences related to digital services. In our study, we accommodate this request and bring forth a broad perspective on experiences with digital practices; we particularly add insight into the challenges with digital practices for patients who also have acute or chronic illness, with some of them also experiencing physical, communicative, and cognitive difficulties. To our knowledge, there is limited existing literature focusing on digital practices that do not have a limited scope, for example, a focus on perspectives on eHealth literacy in the use of apps [ 26 ] or intervention studies with a focus on experiences with digital solutions, for example, telemedicine during the COVID-19 pandemic [ 27 ]. As mentioned by Hjeltholt et al [ 10 ], certain citizens are dependent on their own social networks in the process of using and learning digital tools. Rasi et al [ 28 ] and Airola et al [ 29 ] argued that digital health literacy is situated and should include the capabilities of the individual’s social network. Our findings support these arguments that access to social resources is an important condition; however, the findings also highlight that these resources can be particularly crucial in the use of digital health services, for example, when interpreting and understanding digital and written electronic messages related to one’s own health course or when dealing with physical, cognitive, and communicative disadvantages. Therefore, we argue that the awareness of the disadvantages is important if we want to understand patients’ digital capabilities, and the inclusion of the next of kin can be evident in unveiling challenges that are unknown and not easily visible or when trying to reach patients with digital challenges through digital means.

Studies by Kayser et al [ 30 ] and Kanoe et al [ 31 ] indicated that patients’ abilities to interpret and understand digital health–related services and their benefits are important for the successful implementation of eHealth services—an argument that our findings support. Health literacy in both digital and physical contexts is important if we want to understand how to better design and implement services. Our participants’ statements support the argument that communication through digital means cannot be viewed as similar to face-to-face communication and that an emphasis on digital health literacy demonstrates how health systems are demanding different capabilities from the patients [ 13 ]. We argue that it is important to communicate the purposes of digital services so that both the patient and their next of kin know why they participate and how it can benefit them. Therefore, it is important to make it as clear as possible that digital health services can benefit the patient and that these services are developed to support information, communication, and dialogue between patients and health professionals. However, our findings suggest that even after interpreting and understanding the purposes of digital health services, some patients may still experience challenges when using digital tools.

Therefore, it is important to understand how and why patients learn digital skills, particularly because both experience with digital devices and estimation of the value of digital tools have been highlighted as key factors for digital practices [ 5 , 18 ]. Our findings indicate that a combination of these factors is important, as recognizing the value of digital tools was not enough to facilitate the necessary learning process for some of our participants. Instead, our participants described the use of digital tools as complex and continuous processes in which automation of skills, assistance from others, and time to relearn forgotten knowledge were necessary and important facilitators for learning and understanding digital tools as well as becoming more comfortable and confident in the use of digital health services. This was particularly important, as it was more encouraging for our participants to learn digital tools when they felt secure, instead of feeling afraid and anxious, a point that Bailey et al [ 18 ] also highlighted. The value of digital solutions and the will to learn were greater when challenges were viewed as something to overcome and learn from instead of something that created a feeling of being stupid. This calls for attention on how to simplify and explain digital tools and services so that users do not feel alienated. Our findings also support the argument that digital health literacy should take into account emotional well-being related to digital practice [ 32 ].

The various perspectives that our participants provided regarding the use of digital tools in the health care system indicate that patients are affected by the use of digital health services and their own capabilities to use digital tools. Murray et al [ 33 ] argued that the use of digital tools in health sectors has the potential to improve health and health delivery by improving efficacy, efficiency, accessibility, safety, and personalization, and our participants also highlighted these positive aspects. However, different studies found that some patients, particularly older adults considered socially vulnerable, have lower digital health literacy [ 10 , 34 , 35 ], which is an important determinant of health and may widen disparities and inequity in health care [ 16 ]. Studies on older adult populations’ adaptation to information and communication technology show that engaging with this technology can be limited by the usability of technology, feelings of anxiety and concern, self-perception of technology use, and the need for assistance and inclusive design [ 36 ]. Our participants’ experiences with digital practices support the importance of these focus areas, especially when primarily older patients are admitted to hospitals. Furthermore, our findings indicate that some older patients who used to view themselves as being engaged in their own health care felt more distanced from the health care system because of digital services, and some who did not have the capabilities to use digital tools felt that they were treated differently compared to the rest of society. They did not necessarily view themselves as vulnerable but felt vulnerable in the specific experience of trying to use digital services because they wished that they were more capable. Moreover, this was the case for patients with physical and cognitive difficulties, as they were not necessarily aware of the challenges before experiencing them. Drawing on the phenomenological and feministic approach by Ahmed [ 37 ], these challenges that make patients feel vulnerable are not necessarily visible to others but can instead be viewed as invisible institutional “walls” that do not present themselves before the patient runs into them. Some participants had to experience how their physical, cognitive, or communicative difficulties affected their digital practice to realize that they were not as digitally capable as they once were or as others in society. Furthermore, viewed from this perspective, our findings could be used to argue that digital capabilities should be viewed as a privilege tied to users’ physical bodies and that digital services in the health care system are indirectly making patients without this privilege vulnerable. This calls for more attention to the inequities that digital tools and services create in health care systems and awareness that those who do not use digital tools are not necessarily indifferent about the consequences. Particularly, in a context such as the Danish one, in which the digital strategy is to create an intertwined and user-friendly public digital sector for everyone, it needs to be understood that patients have different digital capabilities and needs. Although some have not yet had a challenging experience that made them feel vulnerable, others are very aware that they receive different treatment and feel that they are on their own or that the rest of the society does not care about them. Inequities in digital health care, such as these, can and should be mitigated or prevented, and our investigation into the experiences with digital practices can help to show that we are creating standards and infrastructures that deliberately exclude the perspectives of those who are most in need of the services offered by the digital health care system [ 8 ]. Therefore, our findings support the notions that flexibility is important in the implementation of universal public digital services [ 17 ]; that it is important to adjust systems in accordance with patients’ eHealth literacy and not only improve the capabilities of individuals [ 38 ]; and that the development and improvement of digital health literacy are not solely an individual responsibility but are also tied to ways in which institutions organize, design, and implement digital tools and services [ 39 ].

Limitations

This qualitative study provided novel insights into the experiences with public digital health services from the perspective of patients in the Danish context, enabling a deeper understanding of how digital health services and digital tools are experienced and used. This helps build a solid foundation for future interventions aimed at digital health literacy and digital health interventions. However, this study has some limitations. First, the study was conducted in a country where digitalization is progressing quickly, and people, therefore, are accustomed to this pace. Therefore, readers must be aware of this. Second, the study included patients with different neurological conditions; some of their digital challenges were caused or worsened by these neurological conditions and are, therefore, not applicable to all patients in the health system. However, the findings provided insights into the patients’ digital practices before their conditions and other challenges not connected to neurological conditions shared by patients. Third, the study was broad, and although a large number of informants was included, from a qualitative research perspective, we would recommend additional research in this field to develop interventions that target digital health literacy and the use of digital health services.

Conclusions

Experiences with digital tools and digital health services are complex and multifaceted. The advantages in communication, finding information, or navigating through one’s own health course work as facilitators for engaging with digital tools and digital health services. However, this is not enough on its own. Furthermore, feeling secure and motivated and having time to relearn and practice skills are important facilitators. Engagement in digital practices for the examined population requires access to continuous assistance from their social network. If patients do not meet requirements, digital health services can be experienced as exclusionary and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges that require assistance. Digitalization of the health care system means that patients do not have the choice to opt out of using digital services without having consequences, resulting in them receiving a different treatment than others. To ensure digitalization does not create inequities in health, it is necessary for developers and the health institutions that create, design, and implement digital services to be aware of differences in digital health literacy and to focus on simplifying communication with patients and next of kin through and about digital services. It is important to focus on helping individuals meet the necessary conditions and finding flexible solutions for those who do not have the same privileges as others if the public digital sector is to work for everyone.

Acknowledgments

The authors would like to thank all the people who gave their time to be interviewed for the study, the clinical nurse specialists who facilitated interviewing patients, and the other nurses on shift who assisted in recruiting participants.

Conflicts of Interest

None declared.

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Abbreviations

Edited by A Mavragani; submitted 14.03.23; peer-reviewed by G Myreteg, J Eriksen, M Siermann; comments to author 18.09.23; revised version received 09.10.23; accepted 27.02.24; published 11.04.24.

©Christian Gybel Jensen, Frederik Gybel Jensen, Mia Ingerslev Loft. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 11.04.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

Unfavorable social factors may raise heart disease risk factors in Asian American adults

Having more unfavorable social determinants of health, such as being unemployed, uninsured or not having education beyond high school, was associated with an increased likelihood of having risk factors for cardiovascular disease among Asian American adults, according to new research published today in the Journal of the American Heart Association , an open access, peer-reviewed journal of the American Heart Association.

The investigation also noted that the link between these unfavorable social determinants of health variables and cardiovascular disease risk factors varied widely among people in different Asian American subgroups in this study. An association does not mean that social determinants of health directly caused the risk factor.

"Despite the perception that Asian Americans may be less impacted by social determinants of health compared to people in other racial/ethnic groups, our findings indicate unfavorable social factors are associated with higher prevalence of cardiovascular risk factors among Asian American adults," said lead study author Eugene Yang, M.D., a professor of medicine at the University of Washington School of Medicine in Seattle.

"The Asian American population is the fastest growing racial/ethnic group in the United States," Yang said. "People of South Asian heritage have higher rates of premature heart disease globally, and they recently have been found to have higher cardiovascular mortality than non-Hispanic white people. Better understanding of why differences in cardiovascular risk exist among Asian subgroups is vital to reducing risk and improving outcomes."

Researchers examined data from the National Health Interview Survey conducted in the U.S. from 2013 to 2018, which included 6,395 adults who self-identified as Asian.

Researchers rated 27 social determinants of health factors as favorable or unfavorable in six areas: economic stability (which included employment and income status); neighborhood and social cohesion (which gauged neighborhood trust and whether homes were owned or rented); psychological distress; food security; education; and health care utilization.

The analysis found a significant relationship between unfavorable social determinants of health and cardiovascular disease risk factors. This relationship varied among people in different Asian American subgroups. Among the findings:

• For all Asian groups included in the data, a higher unfavorable social determinants of health score by one standardized unit was associated with a 14% greater risk of high blood pressure; a 17% greater risk of poor sleep; and a 24% greater risk of Type 2 diabetes -- all of which increase the risk for developing cardiovascular disease.
• a 45% greater likelihood of Type 2 diabetes among Chinese adults and a 24% greater likelihood among Filipino adults;
• a 28% greater risk of high blood pressure among Filipino adults;
• a 42% increased likelihood of insufficient physical activity among Asian Indian adults, a 58% increased likelihood among Chinese adults and a 24% increased likelihood among Filipino adults;
• a 20% likelihood of suboptimal sleep among Asian Indian adults; and
• a 56% and 50% likelihood of nicotine exposure among Chinese adults and Filipino adults, respectively.
• Compared with other Asian American subgroups, adults who identified as Filipino reported the highest prevalence -- 4 out of 7 -- cardiovascular risk factors: poor sleep, high cholesterol, high blood pressure and obesity.

Yang said many social determinants of health are often interconnected, such as neighborhood cohesion, economic stability and use of the health care system.

"It is important to understand how different Asian subgroups are affected," he said. "When Asian people are lumped together, higher risk groups like South Asian people may not be treated aggressively enough, while groups with lower risk, like people of Korean and Japanese descent, may be overtreated for blood pressure or cholesterol."

Study background and details:

• The large, cross-sectional study reviewed data from 2013-2018 National Health Interview Surveys -- annual, nationally representative surveys of U.S. adults.
• Of the 6,395 Asian adults in the survey, about 22% self-identified as Filipino adults; 22% as Asian Indian adults; 21% as Chinese adults; and 36% as other Asian.
• The sample size of Asian American individuals in the national survey was too small to analyze several major Asian populations, including Japanese, Korean and Vietnamese people, as well as other smaller Asian subgroups.
• Nearly 56% of the group were women, and nearly 52% were between the ages of 18 and 44. About 77% of the participants were born outside the United States.
• Participants were assigned scores for social determinants of health by categorizing 27 variables as favorable or unfavorable.
• The cardiovascular risk factors were self-reported and were similar to the American Heart Association's Life's Essential 8 -- eight lifestyle metrics assessing ideal cardiovascular health. These eight metrics include: following a healthy diet, maintaining a healthy weight, getting regular exercise and enough quality sleep, avoiding nicotine exposure and maintaining healthy levels of blood pressure, glucose and cholesterol. However, healthy diet was not measured in this study. Reaching optimal levels of these eight metrics improves heart health and reduces the risk for heart disease and stroke.

Limitations of the study include that its small sample size did not allow for analysis of some Asian subgroups (Japanese, Korean, Vietnamese and other Asian people). In addition, it examined self-reported survey data on social factors and cardiovascular risk factors at a single point in time. Therefore, the analysis could not assess long-term social determinants of health patterns, and it could not prove that unfavorable social factors caused the development of cardiovascular disease risk factors. Furthermore, language barriers may have been a factor for some participants because the National Heath Interview Surveys were only conducted in English and Spanish.

Study authors noted that it is vital to include more Asian Americans in national surveys to reveal potential differences in optimal social determinants of health profiles and cardiovascular risk factor prevalence and outcomes.

• Heart Disease
• Cholesterol
• Mental Health Research
• Hypertension
• Diseases and Conditions
• Chronic Illness
• Health Policy
• Epidemiology
• Athletic training
• Public health
• Environmental impact assessment
• Personalized medicine
• Premature birth

Story Source:

Materials provided by American Heart Association . Note: Content may be edited for style and length.

Journal Reference :

• Alicia L. Zhu, Austin D. Le, Yuemeng Li, Latha P. Palaniappan, Malathi Srinivasan, Nilay S. Shah, Sally S. Wong, Javier Valero‐Elizondo, Tali Elfassy, Eugene Yang. Social Determinants of Cardiovascular Risk Factors Among Asian American Subgroups . Journal of the American Heart Association , 2024; DOI: 10.1161/JAHA.123.032509

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