literature review of health sector

The Management Perspective in Digital Health Literature: Systematic Review

Affiliations.

• 1 Healthcare Management, Winterthur Institute of Health Economics, Zurich University of Applied Sciences, Winterthur, Switzerland.
• 2 University Hospital Zurich, Zurich, Switzerland.
• 3 Department of Health Sciences, University of Applied Sciences Fulda, Fulda, Germany.
• PMID: 36355426
• PMCID: PMC9693713
• DOI: 10.2196/37624

Background: New digital health technologies are considered one solution to challenges in the health sector, which include rising numbers of chronic diseases and increased health spending. As digitalization in health care is still in its infancy, there are many unanswered questions about the impact of digital health on management.

Objective: This paper assesses the current state of knowledge in the field of digital health from a management perspective. It highlights research gaps within this field to determine future research opportunities.

Methods: A systematic review of digital health literature was conducted using 3 databases. The chosen articles (N=38) were classified according to a taxonomy developed for the purpose, and research gaps were identified based on the topic areas discussed.

Results: The literature review revealed a slight prevalence of practical (n=21, 55%) over theoretical (n=17, 45%) approaches. Most of the papers (n=23, 61%) deal with information technology (IT) and are, therefore, focused more on technology and less on management. The research question in most of the papers (n=31, 82%) deals with the creation of concepts, and very few (n=4, 11%) evaluate or even question existing solutions. Most consider the main reason for digitalization to be the optimization of operational processes (n=26, 68%), and 42% (n=16) deal with new business models. The topic area discussed most frequently was found to be eHealth (n=30, 79%). By contrast, the field of tech health with topics such as sensors receives the least attention (n=3, 8%), despite its significant potential for health care processes and strategy.

Conclusions: Three main research propositions were identified. First, research into digital health innovation should not focus solely on the technology aspects but also on its implications for strategic and operational management. Second, the research community should target other domains besides eHealth. Third, we observed a lack of quantitative research on the real impact of digital health on organizations and their management. More quantitative evidence is required regarding the expected outcome and impact of the implementation of digital health solutions into our health care organizations.

Keywords: data health; digital health; eHealth; health care management; health technology; literature review; management; tech health; trend health.

©Alfred Angerer, Johanna Stahl, Egzona Krasniqi, Stefan Banning. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 10.11.2022.

Publication types

• Systematic Review
• Delivery of Health Care
• Publications
• Telemedicine*

• Open access
• Published: 12 October 2020

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

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

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

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

Systematic review registration

PROSPERO CRD42018110559

Peer Review reports

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

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

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

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

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

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

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

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

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

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

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

PRIMSA flow diagram (attached)

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

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

Study design, location, and disciplines

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

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

Study quality

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

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

Graphic representation of key themes and subthemes identified (attached)

Barriers and facilitators

Reasons for not sharing.

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

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

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

Reasons for sharing

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

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

Views on sharing

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

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

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

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

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

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

Experience of data sharing

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

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

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

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

Predictors of data sharing and norms

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

Policy framework

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

Research funding

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

Access and ownership

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

Access, information systems, and metadata

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

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

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

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

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

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

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

Acknowledgement

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

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

Promotion/professional criteria

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

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

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

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

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

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

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

Limitations

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

Implications

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

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

Availability of data and materials

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

Abbreviations

Bioresource Research Impact Factor/Framework

Collective benefit, authority to control, responsibility, and ethics

Citation of BioResources in journal Articles

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Acknowledgements

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

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

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

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Supply Chain Management in Healthcare: A Literature Review

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• Tuğçe Beldek 3 ,
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Supply chain management becomes more important in the developing world in order to provide a material flow with an optimum cost and time generally. Many sectors focus on supply chain management optimization and qualifications to construct a better network of suppliers for their end consumers. Especially in healthcare sector, not only for pharmaceutical products but also for hospital materials, supply chain management gets importance for service quality and patient satisfaction. Thus, there are many studies about supply chain management in healthcare to emphasize its importance. In this study, it is aimed to put forward a literature review of supply chain management in healthcare in order to give a perspective by expressing the important cases and researches which are parallel to the latest studies. Furthermore, this literature review will assess a perspective in order to understand how to manage a complex supply chain in healthcare sector by investigating studies in the literature.

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Beldek, T., Konyalıoğlu, A.K., Akdağ, H.C. (2020). Supply Chain Management in Healthcare: A Literature Review. In: Durakbasa, N., Gençyılmaz, M. (eds) Proceedings of the International Symposium for Production Research 2019. ISPR ISPR 2019 2019. Lecture Notes in Mechanical Engineering. Springer, Cham. https://doi.org/10.1007/978-3-030-31343-2_50

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Health insurance sector in India: an analysis of its performance

Vilakshan - XIMB Journal of Management

ISSN : 0973-1954

Article publication date: 30 November 2020

Issue publication date: 16 December 2020

Health insurance is one of the major contributors of growth of general insurance industry in India. It alone accounts for around 29% of total general insurance premium income earned in India. The growth of this sector is important from the perspective of overall growth of general insurance Industry. At the same time, problems in this sector are also many which are affecting its performance.

Design/methodology/approach

The paper provides an understanding on performance of health insurance sector in India. This study attempts to find out how much claims and commission and management expenses it has to incur to earn certain amount of premium. Methodology used for the study is regression analysis to establish relationship between dependent variable (Profit/Loss) and independent variable (Health Insurance Premium earned).

Findings of the study indicate that there is significant relationship between earned premium and underwriting loss. There has been increase of premium earnings which instead of increasing profit for the sector in fact has increased underwriting loss over the years. The earnings of the sector is growing at compounded annual growth rate of 27% still it is unable to earn underwriting profit.

Originality/value

This study is self-driven based on secondary data obtained from insurance regulatory and development authority site.

• Health insurance premium
• Management expenses
• Insurance regulatory and development authority
• Underwriting loss
• Compound annual growth rate

Dutta, M.M. (2020), "Health insurance sector in India: an analysis of its performance", Vilakshan - XIMB Journal of Management , Vol. 17 No. 1/2, pp. 97-109. https://doi.org/10.1108/XJM-07-2020-0021

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Copyright © 2020, Madan Mohan Dutta.

Published in Vilakshan - XIMB Journal of Management . Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence maybe seen at http://creativecommons.org/licences/by/4.0/legalcode

1. Introduction

1.1 meaning of insurance.

Insurance is a contract between two parties where by one party agrees to undertake the risk of the other in exchange for consideration known as premium and promises to indemnify the party on happening of an uncertain event. The great advantage of insurance is that it spreads the risk of a few people over a large group of people exposed to risk of similar type.

Insurance has been identified as a sunrise sector by the financial planners of India. The insurance industry has lot of potential to grow, penetrate and service the masses of India. Insurance is all about protection. An insured needs two types of protection life and non-life. General insurance industry deals with non-life protection of the insured of which health insurance is a part.

1.2 Meaning of health insurance

Health insurance is a part of general insurance which contributes about 29% of premium amongst all other sectors of general insurance. But problems in this sector are many which is the driving force behind this study. This study will help the insurance companies to understand their performance and the quantum of losses that this sector is making over the years.

A plan that covers or shares the expenses associated with health care can be described as health insurance. These plans fall into commercial health insurance, which is provided by government, private and stand-alone health insurance companies.

Health insurance in India typically pays for only inpatient hospitalization and for treatment at hospitals in India. Outpatient services are not payable under health policies in India. The first health policy in India was Mediclaim Policy. In 2000, the Government of India liberalized insurance and allowed private players into the insurance sector. The advent of private insurers in India saw the introduction of many innovative products like family floater plans, critical illness plans, hospital cash and top-up policies.

Health insurance in India is an emerging insurance sector after life and automobile insurance sector. Rise in middle class, higher hospitalization cost, expensive health care, digitization and increase in awareness level are some important drivers for the growth of health insurance market in India.

Lifestyle diseases are on the rise. A sedentary lifestyle has pervaded our being. There is lower physical labour today than earlier and there is no reason why this would not be the trend going forward. The implication is the advent of lifestyle chronic diseases such as cardiac problems and diabetes.

In the context of the Indian health insurance industry, one could look at it both ways. Mired by low penetration and negative consumer perception about its utility are affecting the prospect of this industry. The flipside though is that we have hardly scratched the surface of the opportunity that lies in the future. It is as if the glass is half full. Much remains to be conquered and even more remains to be accomplished.

Health insurance companies needs to be optimistic and have courage to bring in innovation in the areas of product, services and distribution system. Bring it to the fold as the safety net that smartly covers and craft a health insurance plan befitting the need of the customers.

1.3 Background of health insurance sector in India

India’s tryst with health insurance programme goes back to the late 1940s and early 1950s when the civil servants (Central Government Health Scheme) and formal sector workers (Employees’ State Insurance Scheme) were enrolled into a contributory but heavily subsidized health insurance programmes. As a consequence of liberalization of the economy since the early 1990s, the government opened up private sector (including health insurance) in 1999. This development threw open the possibility for higher income groups to access quality care from private tertiary care facilities. However, India in the past five years (since 2007) has witnessed a plethora of new initiatives, both by the central government and a host of state governments also entering the bandwagon of health insurance. One of the reasons for initiating such programs may be traced to the commitment of the governments in India to scale up public spending in health care.

1.4 The need for health insurance in India

1.4.1 lifestyles have changed..

Indians today suffer from high levels of stress. Long hours at work, little exercise, disregard for a healthy balanced diet and a consequent dependence on junk food have weakened our immune systems and put us at an increased risk of contracting illnesses.

1.4.2 Rare non-communicable diseases are now common.

Obesity, high blood pressure, strokes and heart attacks, which were earlier considered rare, now affect an increasing number of urban Indians.

1.4.3 Medical care is unbelievably expensive.

Medical breakthroughs have resulted in cures for dreaded diseases. These cures however are available only to a select few. This is because of high operating and treatment expenses.

1.4.4 Indirect costs add to the financial burden.

Indirect sources of expense like travel, boarding and lodging, and even temporary loss of income account for as much as 35% of the overall cost of treatment. These facts are overlooked when planning for medical expenses.

1.4.5 Incomplete financial planning.

Most of us have insured our home, vehicle, child’s education and even our retirement years. Ironically however we have not insured our health. We ignore the fact that illnesses strike without warning and seriously impact our finances and eat into our savings in the absence of a good health insurance or medical insurance plan.

1.5 Classification of health insurance plans in India

Health insurance plans in India today can be broadly classified into the following categories:

1.5.1 Hospitalization.

Hospitalization plans are indemnity plans that pay cost of hospitalization and medical costs of the insured subject to the sum insured. There is another type of hospitalization policy called a top-up policy . Top-up policies have a high deductible typically set a level of existing cover.

1.5.2 Family floater health insurance.

Family health insurance plan covers entire family in one health insurance plan. It works under assumption that not all member of a family will suffer from illness in one time.

1.5.3 Pre-existing disease cover plans.

It offers covers against disease that policyholder had before buying health policy. Pre-existing disease cover plans offers cover against pre-existing disease, e.g. diabetes, kidney failure and many more. After waiting for two to four years, it gives covers to the insured.

1.5.4 Senior citizen health insurance.

This type of health insurance plan is for older people in the family. It provides covers and protection from health issues during old age.

1.5.5 Maternity Health insurance.

Maternity health insurance ensures coverage for maternity and other additional expenses.

1.5.6 Hospital daily cash benefit plans.

Daily cash benefits are a defined benefit policy that pays a defined sum of money for every day of hospitalization.

1.5.7 Critical illness plans.

These are benefit-based policies which pay a lump sum amount on certain critical illnesses, e.g. heart attack, cancer and stroke.

1.5.8 Disease-specific special plans.

Some companies offer specially designed disease-specific plans such as Dengue Care and Corona Kavach policy.

1.6 Strength, weakness, opportunity and threat analysis of health insurance sector (SWOT analysis)

The strengths, weaknesses, opportunities and threats (SWOT) is a study undertaken to identify internal strengths and weaknesses as well as external opportunities and threats of the health insurance sector.

1.6.1 Strengths.

The growth trend of the health insurance sector is likely to be high due to rise in per capita income and emerging middle-income group in India. New products are being launched in this sector by different insurance companies which will help to satisfy customers need. Customers will be hugely benefited when cash less facility will be provided to all across the country by all the insurance companies.

1.6.2 Weaknesses.

The financial condition of this sector is weak due to low investment in this sector. The public sector insurance companies are still dominating this industry due to their greater infrastructure facilities. This sector is prone to high claim ratio and many false claims are also made.

1.6.3 Opportunities.

The possibility of future growth of this sector is high, as penetration in the rural sector is low. The improvement of technology and the use of internet facility are helping this sector to grow in magnitude and move towards environment-friendly paperless regime.

1.6.4 Threats.

The biggest threat of this sector lies in the change in the government regulations. The profitability of this sector is affected due to increasing expenses and claims. The economic slowdown and recession in the economy can affect growth of this sector adversely. The increasing losses and need for insurance might reach a point of no return where insurance companies may be compelled to decline an insurance policy.

1.7 Political economic socio cultural and technological analysis of health insurance sector (PEST analysis)

This analysis describes a framework of macro-environmental factors used as strategic tool for understanding business position, growth potential and direction for operations.

1.7.1 Political factors.

Service tax on premium on insurance policies is being increased by the government for past few years during budget. Government monopoly in this sector came to an end after insurance companies were opened up for private participation in the year 2000. Foreign players were allowed to enter into joint venture with their Indian counterpart with 26% holding and which was further increased to 49% in the year 2015.

1.7.2 Economic factors.

The gross savings of people in India have increased significantly thereby encouraging people to buy insurance policy to cover their risks. Insurance companies are fast becoming prominent players in the security market. As these companies have huge disposable income which they are investing in the security market.

1.7.3 Socio-cultural factors.

Increase in insurance knowledge is helping people to increase their awareness about the risk to be covered through insurance. Change in lifestyle is leading to increase in risk thereby giving an opportunity to insurance companies to innovate newer products. Societal benefit is derived by transfer of risk through insurance due to improved socio-cultural environment.

1.7.4 Technological factors.

Insurance companies deals in large database and maintaining it by the application of latest technology is huge gain for this sector. Technological advancement has helped insurance companies to sale their products through their electronic portals. This has made their task of providing service to the customers easier and faster.

2. Review of literature

After opening up of the insurance industry health insurance sector has become significant both from economic and social point of view and researchers have explored and probed these aspects.

Ellis et al. (2000) reviewed a variety of health insurance systems in India. It was revealed that there is a need for a competitive environment which can only happen with the opening up of the insurance sector. Aubu (2014) conducted a comparative study on public and private companies towards marketing of health insurance policies. Study revealed that private sector services evoked better response than that of public sector because of new strategies and technologies adopted by them. Nair (2019) has made a comparative study of the satisfaction level of health insurance claimants of public and private sector general insurance companies. It was revealed that majority of the respondents had claim of reimbursement nature through third party administrator. Satisfaction with respect to settlement of claim was found relatively higher for public sector than private sector. Devadasan et al. (2004) studied community health insurance to be an important intermediate step in the evolution of an equitable health financing mechanism in Europe and Japan. It was concluded that community health insurance programmes in India offer valuable lessons for its policy makers. Kumar (2009) examined the role of insurance in financing health care in India. It was found that insurance can be an important means of mobilizing resources, providing risk protection and health insurance facilities. But for this to happen, it will require systemic reforms of this sector from the end of the Government of India. Dror et al. (2006) studied about willingness among rural and poor persons in India to pay for their health insurance. Study revealed that insured persons were more willing to pay for their insurance than the uninsured persons. Jayaprakash (2007) examined to understand the hurdles preventing the people to purchase health insurance policies in the country and methods to reduce claims ratio in this sector. Yadav and Sudhakar (2017) studied personal factors influencing purchase decision of health insurance policies in India. It was found that factors such as awareness, tax benefit, financial security and risk coverage has significant influence on purchase decision of health insurance policy holders. Thomas (2017) examined health insurance in India from the perspective of consumer insights. It was found that consumers consider various aspects before choosing a health insurer like presence of a good hospital network, policy coverage and firm with wide product choice and responsive employees. Savita (2014) studied the reason for the decline of membership of micro health insurance in Karnataka. Major reason for this decline was lack of money, lack of clarity on the scheme and intra house-hold factors. However designing the scheme according to the need of the customer is the main challenge of the micro insurance sector. Shah (2017) analysed health insurance sector post liberalization in India. It was found that significant relationship exists between premiums collected and claims paid and demographic variables impacted policy holding status of the respondents. Binny and Gupta (2017) examined opportunities and challenges of health insurance in India. These opportunities are facilitating market players to expand their business and competitiveness in the market. But there are some structural problems faced by the companies such as high claim ratio and changing need of the customers which entails companies to innovate products for the satisfaction of the customers. Chatterjee et al. (2018) have studied health insurance sector in India. The premise of this paper was to study the current situation of the health-care insurance industry in India. It was observed that India is focusing more on short-term care of its citizens and must move from short-term to long-term care. Gambhir et al. (2019) studied out-patient coverage of private sector insurance in India. It was revealed that the share of the private health insurance companies has increased considerably, despite of the fact that health insurance is not a good deal. Chauhan (2019) examined medical underwriting and rating modalities in health insurance sector. It was revealed that while underwriting a health policy one has to keep in mind the various aspects of insured including lifestyle, occupation, health condition and habits. There have been substantial studies on health insurance done in India and abroad. But there has not been any work on performance of health insurance sector based on underwriting profit or loss.

3. Research gap

After extensive review of literature it is understood that there has not been substantial study on the performance of health insurance sector taking underwriting profit or loss into consideration. In spite of high rate of growth of earned premium, this sector is unable to make underwriting profit. This is mainly because growth of premium is more than compensated by claims incurred and commission and other expenses paid. Thereby leading to growth of underwriting loss over the years across the different insurance companies covered under both public and private sector. This unique feature of negative performance of this sector has not been studied so far in India.

4. Objectives

review health insurance scenario in India; and

study the performance of health insurance sector in India with respect to underwriting profit or loss by the application of regression analysis.

5. Research methodology

The study is based on secondary data sourced from the annual reports of Insurance Regulatory Development Authority (IRDA), various journals, research articles and websites. An attempt has been made to evaluate the performance of the health insurance sector in India. Appropriate research tools have been used as per the need and type of the study. The information so collected has been classified, tabulated and analysed as per the objectives of the study.

The data is based on a time period of 12 years ranging from 2006–2007 to 2018–2019.

Secondary data analysis has been done using regression of the form: Y =   a   +   b X

The research has used SPSS statistics software package for carrying out regression and for the various graphs Microsoft Excel software has been used.

5.1 The problem statement

It is taken to be a general assumption that whenever the premium increases the profit also increases. This determines that profits are actually dependent on the premium income. Hence, whenever the premium tends to increase, the profit made also supposed to increase.

The aim of the study is to find out whether the underwriting profit of the health insurance sector is increasing or there is an underwriting loss.

The problem statement is resolved by applying regression analysis between the premium earned and underwriting profit or loss incurred. It is assumed that if the underwriting profit increases along with the premium received, then the pattern forms a normal distribution and alternate hypothesis can be accepted and if this pattern of dependability is not found then the null hypothesis will be accepted stating that there is no relation between the premium and the underwriting loss or the underwriting profit by the sector. But what is happening in this sector is the increase in premium is leading to increase in underwriting loss. So premium is negatively impacting underwriting profit which is astonishing thing to happen and is the crux of the problem of this sector.

5.1.1 Underwriting profit/loss = net premium earned – (claim settled + commission and management expenses incurred).

Underwriting profit is a term used in the insurance industry to indicate earned premium remaining after claims have been settled and commission and administrative expenses have been paid. It excludes income from investment earned on premium held by the company. It is the profit generated by the insurance company in the normal course of its business.

5.2 Data analysis

Table 1 shows that health insurance premium increased from Rs.1910 crores in 2006–2007 to Rs. 33011 crores in 2018–2019. But claims incurred together with commission and management expenses have grown from Rs. 3349 crores to Rs. 40076 crores during the same period. So the claims and management expenses incurred together is more than the health insurance premium earned in all the years of our study thereby leading to underwriting loss.

Claim incurred shown above is the outcome of the risk covered against which premium is received and commission and management expenses are incurred to obtain contract of insurance. Both these expenses are important for insurance companies to generate new business as stiff competition exists in this sector since it was opened up in the year 2000.

Figure 1 depicts the relationship between health insurance premium earned and claims and management expenses incurred by the insurance companies of the health insurance sector for the period 2006–2007 to 2018–2019.

Bar chart between premiums earned and claims and management expenses incurred show that claims and management expenses together is higher than premium earned in all the years of the study thereby leading to losses. Claims, commission and management expenses are important factors leading to the sale of insurance policies thereby earning revenue for the insurance companies in the form of premium. But proper management of claims and commission and management expenses will help this sector to improve its performance.

Table 2 provides insight into the performance of health insurance sector in India. The growth of health insurance in India has been from Rs.1909 crores for the financial year 2006–2007 to Rs. 33011crores for the financial year 2018–2019. The growth percentage is 1629% i.e. growing at an average rate of 135% per annum. Compounded Annual Growth Rate (CAGR) is working out to be 27%.

From the same table, it can be inferred that health insurance sector is making underwriting loss in all the financial years. There is no specific trend can be seen, it has increased in some years and decreased in some other years. Here underwriting loss is calculated by deducting claims and commission and management expenses incurred from health insurance premium earned during these periods.

With every unit of increase in premium income the claims incurred together with commission and management expenses paid increased more than a unit. Thereby up setting the bottom line. So instead of earning profit due to better business through higher premium income, it has incurred losses.

Underwriting principles needs to be streamlined so that proper scrutiny of each policy is carried out so that performance of this sector improves.

It is seen from Figure 2 that there is stiff rise in premium earned over the years but claims and commission and management expenses incurred have also grown equally and together surpassed earned premium. So the net impact resulted in loss to this sector which can also be seen in the figure. It is also seen that loss is increasing over the years. So, increase in earnings of revenue in the form of premium is leading to increase in losses in this sector which is normally not seen in any other sectors.

But a time will come when commission and management expenses will stabilize through market forces to minimize underwriting losses. On the other hand, it will also require proper management of claims so that health insurance sector can come of this unprofitable period.

5.3 Interpretation of regression analysis

5.3.1 regression model..

Where Y = Dependent variable

X = Independent variablea = Intercept of the lineb = Slope of the line

5.3.2 Regression fit.

Here, Y is dependent variable (Underwriting Profit or Loss) which is to be predicted, X is the known independent variable (Health Insurance Premium earned) on which predictions are to be based and a and b are parameters, the value of which are to be determined ( Table 3 ). Y =   − 1028.737 − 0.226   X

5.3.3 Predictive ability of the model.

The value of R 2 = 0.866 which explains 86.6% relationship between health insurance premium earned and loss made by this sector ( Table 4 ). In other words, 13.4% of the total variation of the relationship has remained unexplained.

4.1 Regression coefficients ( Table 5 ).

H1.1 : β = 0 (No influence of Health Insurance Premium earned on Underwriting Profit or Loss made)

5.4.1.2 Alternative hypothesis.

H1.2 : β ≠ 0 (Health Insurance Premium earned influences underwriting Profit or Loss made by this sector)

The computed p -value at 95% confidence level is 0.000 which is less than 0.05. This is the confidence with which the alternative hypothesis is accepted and the null hypothesis is rejected. Thus regression equation shows that there is influence of health insurance premium earned on loss incurred by this sector.

The outcome obtained in this analysis is not what happens normally in the industry. With the increase of revenue income in the form of premium, it may lead to either profit or loss. But what is happening surprisingly here is that increase of revenue income is leading to increase of losses. So growth of premium income instead of influencing profit is actually influencing growth of losses.

6.1 Findings

The finding from the analysis is listed below:

The average growth of net premium for the health insurance has been around 135% per annum even then this sector is unable to earn underwriting profit.

The CAGR works out to around 27%. CAGR of 27% for insurance sector is considered to be very good rate of growth by any standard.

Along with high growth of premium, claims and commission and management expenses incurred in this sector have also grown substantially and together it surpassed in all the years of the study.

Thus, growth of claims and commission and management expenses incurred has more than compensated high rate of growth of health insurance premium earned. This resulted into underwriting loss that this sector is consistently making.

Astonishing findings has been higher rate of increase of premium earnings leading to higher rate of underwriting loss incurred over the years. Even though the sector is showing promise in terms of its revenue collection, but it is not enough to earn underwriting profit.

6.2 Recommendations

COVID 19 outbreak in India has led to a spike in health-care costs in the country. So, upward revision of premium charges must be considered to see bottom line improvement in this sector.

Immediate investigation of the claim is required. This will enable the insurers to curb unfair practice and dishonest means of making a claim which is rampant in this sector.

Health insurance market is not able to attract younger generation of the society. So entry age-based pricing might attract this group of customers. An individual insured at the age 30 and after 10 years of continuous coverage the premium will be less than the other individual buying a policy at the age of 40 for the first time.

6.3 Limitations and scope of future studies

The analysis of performance of health insurance sector in India taking underwriting profit into consideration is the only study of its kind in this sector. As a result, adequate literature on the subject was not available.

Health insurance and health care are part of medical care industry and are inter dependent with each other. So performance of health insurance sector can be better understood by taking health-care industry into consideration which is beyond the scope of the study.

This sector is consistently incurring losses. So, new ideas need to be incorporated to reduce losses if not making profits.

Opportunity of the insurance companies in this sector lies in establishing innovative product, services and distribution channels. So, continuous modification by the application of research is required to be undertaken.

Health insurance sector will take a massive hit, as tax benefit is going to be optional from this financial year. This can be a subject of study for the future.

6.4 Conclusion

This sector is prone to claims and its bottom line is always under tremendous pressure. In recent times, IRDA has taken bold step by increasing the premium rate of health insurance products. This will help in the growth of this sector.

With better technological expertise coming in from the foreign partners and involvement by the IRDA the health insurance sector in India must turn around and start to earn profit.

The COVID-19 pandemic is a challenge for the health insurance industry on various fronts at the same time it provides an opportunity to the insurers to fetch in new customers.

The main reason for high commission and management expense being cut-throat competition brought in after opening up of the insurance sector in the year 2000. So, new companies are offering higher incentives to the agents and brokers to penetrate into the market. This trend needs to be arrested as indirectly it is affecting profitability of this sector.

The study will richly contribute to the existing literature and help insurance companies to know about their performance and take necessary measures to rectify the situation.

Chart on health insurance premium earned and claims and management expenses paid

Chart on performance of health insurance sector in India

Data showing health insurance premium earned and claims and management expenses paid

. Dependent variable: Underwriting profit or loss;

. Predictors: (Constant), Health insurance premium earned

Aubu , R. ( 2014 ), “ Marketing of health insurance policies: a comparative study on public and private insurance companies in Chennai city ”, UGC Thesis, Shodgganga.inflibnet.ac.in .

Chatterjee , S. , Giri , A. and Bandyopadhyay , S.N. ( 2018 ), “ Health insurance sector in India: a study ”, Tech Vistas , Vol. 1 , pp. 105 - 115 .

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Devadasan , N. , Ranson , K. , Damme , W.V. and Criel , B. ( 2004 ), “ Community health insurance in India: an overview ”, Health Policy , Vol. 29 No. 2 , pp. 133 - 172 .

Dror , D.M. , Radermacher , R. and Koren , R. ( 2006 ), “ Willingness to pay for health insurance among rural and poor persons: Field evidence form seven micro health insurance units in India ”, Health Policy , pp. 1 - 16 .

Ellis , R.P. , Alam , M. and Gupta , I. ( 2000 ), “ Health insurance in India: Prognosis and prospectus ”, Economic and Political Weekly , Vol. 35 No. 4 , pp. 207 - 217 .

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Gupta , D. and Gupta , M.B. ( 2017 ), “ Health insurance in India-Opportunities and challenges ”, International Journal of Latest Technology in Engineering, Management and Applied Science , Vol. 6 , pp. 36 - 43 .

Hand book on India Insurance Statistics revisited ( 2020 ), “ Insurance regulatory and development authority website ”, available at: www.irda.gov.in ( accessed 2 July 2020 ).

Jayaprakash , S. ( 2007 ), “ An explorative study on health insurance industry in India ”, UGC Thesis, Shodgganga.inflibnet.ac.in .

Kumar , A. ( 2009 ), “ Health insurance in India: is it the way forward? ”, World Health Statistics (WHO) , pp. 1 - 25 .

Nair , S. ( 2019 ), “ A comparative study of the satisfaction level of health insurance claimants of public and private sector general insurance companies ”, The Journal of Insurance Institute of India) , Vol. VI , pp. 33 - 42 .

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Yadav , S.C. and Sudhakar , A. ( 2017 ), “ Personal factors influencing purchase decision making: a study of health insurance sector in India ”, BIMAQUEST , Vol. 17 , pp. 48 - 59 .

Further reading

Beri , G.C. ( 2010 ), Marketing Research , TATA McGraw Hill Education Private , New Delhi, ND .

Dutta , M.M. and Mitra , G. ( 2017 ), “ Performance of Indian automobile insurance sector ”, KINDLER , Vol. 17 , pp. 160 - 168 .

Majumdar , P.I. and Diwan , M.G. ( 2001 ), Principals of Insurance , Insurance Institute of India , Mumbai, MM .

Pai , V.A. and Diwan , M.G. ( 2001 ), “ Practice of general insurance ”, Insurance Institute of India , Mumbai, MM .

Shahi , A.K. and Gill , H.S. ( 2013 ), “ Origin, growth, pattern and trends: a study of Indian health insurance sector ”, IOSR Journal of Humanities and Social Science , Vol. 12 , pp. 1 - 9 .

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• Research Article
• Open access
• Published: 20 January 2024

Dementia care pathways in prisons – a comprehensive scoping review

• Samantha Treacy 1 ,
• Steven Martin 2 ,
• Nelum Samarutilake 3 ,
• Veronica Phillips 4 ,
• Ben R. Underwood 3 , 5 &
• Tine Van Bortel   ORCID: orcid.org/0000-0003-0467-6393 2 , 3  

Health & Justice volume  12 , Article number:  2 ( 2024 ) Cite this article

1038 Accesses

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The number of older people in prison is growing. As a result, there will also be more prisoners suffering from dementia. The support and management of this population is likely to present multiple challenges to the prison system.

To examine the published literature on the care and supervision of people living in prison with dementia and on transitioning into the community; to identify good practice and recommendations that might inform the development of prison dementia care pathways.

A scoping review methodology was adopted with reporting guided by the PRISMA extension for scoping reviews checklist and explanation.

Sixty-seven papers were included. Most of these were from high income countries, with the majority from the United Kingdom ( n  = 34), followed by the United States ( n  = 15), and Australia ( n  = 12). One further paper was from India.

The literature indicated that there were difficulties across the prison system for people with dementia along the pathway from reception to release and resettlement. These touched upon all aspects of prison life and its environment, including health and social care. A lack of resources and national and regional policies were identified as important barriers, although a number of solutions were also identified in the literature, including the development of locally tailored policies and increased collaboration with the voluntary sector.

To our knowledge, this is the most comprehensive and inclusive review of the literature on dementia care pathways in prison to date. It has identified a number of important areas of concern and opportunities for future research across the prison system, and its operations. This will hopefully lead to the identification or adaptation of interventions to be implemented and evaluated, and facilitate the development of dementia care pathways in prisons.

The number of older people (defined here as those over 50 Footnote 1 ) being held in prison in England and Wales has almost tripled over the last 20 years, and they now represent 17.1% of that population (Ministry of Justice, 2022a ). The growing number of older people has brought with it an increasing number of health and social care problems, reportedly affecting around 85% of older people in prison, with associated costs (Di Lorito, et al., 2018 ; Hayes et al., 2012 , 2013 ; Senior, et al., 2013 ). It has been estimated that 8.1% of those over the age of 50 in prison have mild cognitive impairment or dementia, which is much higher than estimates for this age group in the general population (Dunne et al., 2021 ; Forsyth et al., 2020 ). This pattern of poor health also increased the vulnerability of older people in prison during the pandemic (Kay, 2020 ).

Prison policy and legislation mandates that health and social care be ‘equivalent’ to that provided in the community (Care Act, 2014 ; Department of Health, 1999 ). Despite this, provisions are reportedly inconsistent, and the government has been described as ‘failing’ in its duty of care (Health and Social Care Committee, 2018 ; HM Inspectorate of Prisons & Care Quality Commission, 2018 ). This is likely exacerbated by the suspension and limiting of healthcare services during the pandemic, noted to have had a ‘profound’ impact on people’s health and wellbeing (HM Inspectorate of Prisons, 2021 ). This may be particularly so for people living in prison with dementia (PLiPWD), whereby the difficulties of delivering health and social care are compounded by inappropriate buildings, environments, and prison regimes (rules and regulations). In addition, PLiPWDs may experience an increase in social isolation, including separation from friends and family, all of which may make their time in prison more challenging (Moll, 2013 ; Peacock et al., 2019 ).

There is no current national strategy for older people in prison in England and Wales, including PLiPWD, although the British government recently agreed that there is a need for one (Justice Committee, 2020 ). A ‘Model for Operational Delivery’ for older people has been published by Her Majesty's Prison & Probation Service ( 2018 ) in England and Wales, though this is guidance only and the “properly resourced and coordinated strategy” previously called for has not been produced (Prisons & Probation Ombudsman, 2017 , p7; Brooke and Rybacka, 2020 ; HM Inspectorate of Prisons, 2019 ; Justice Committee, 2020 ). One way of attempting to standardise and improve the quality of treatment and care in the community has been through the use of care pathways (Centre for Policy on Ageing, 2014 ; Schrijvers et al., 2012 ). Care pathways have been defined as “a complex intervention for the mutual decision-making and organisation of care processes for a well-defined group of patients during a well-defined period”, involving an articulation of goals and key aspects of evidence-based care, coordination and sequencing of activities and outcomes evaluation (Vanhaecht, et al., 2007 , p137).

The development of care pathways within the prison system lags behind that of the community, but the National Institute for Health and Care Excellence (NICE) has produced a pathway for prisoner health for England and Wales (National Institute for Health and Care Excellence, 2019 ), and there is a care pathway for older prisoners in Wales (Welsh Government & Ministry of Justice, 2011 ). There has also recently been an overall care pathway developed for people in prison with mild cognitive impairment and dementia, although this has not been implemented as yet, and it does not include any details regarding release and resettlement (Forsyth et al, 2020 ). It has been recommended that care pathways should be developed locally, as they are context-sensitive, should be viewed as processual and flexible, and the needs of the person, their experiences and characteristics need to be taken into account – such as age, gender and race (Centre for Policy on Ageing, 2014 ; Pinder, et al., 2005 ).

Here we review the current literature on people living in prison with dementia. There have been two recent systematic literature reviews conducted on PLiPWD, both of which only included primary research studies that were small in number (Brooke and Rybacka, 2020 ( n  = 10); Peacock et al., 2019 ( n  = 8)), and focused on prevalence, identification (screening and diagnosis), and the need for tailored programming and staff training. Peacock et al., ( 2019 ) identified dementia as a concern and suggested recommendations for improved screening and care practices. Brooke et al. ( 2020 ) noted that, whilst the prevalence of dementia in prison populations was largely unknown, there was a need for national policies and local strategies that support a multi-disciplinary approach to early detection, screening and diagnosis. Neither paper, however, reported on the much more extensive and rich grey literature in this area (Brooke and Rybacka, 2020 ), to help comprehensively identify the systemic and operational problems, barriers and potential solutions that would be useful to consider in developing local dementia care pathways. Therefore, the aim of this paper is to conduct a comprehensive systematic scoping review of the available published literature on the support and management of PLiPWD in prison and upon transitioning into the community, and to identify practice and recommendations that would be useful to consider in the development of a local prison dementia care pathway.

A scoping review methodology using Arksey and O’Malley’s ( 2005 ) five-stage framework was adopted for this review. Reporting was guided by the PRISMA extension for scoping reviews checklist and explanation (Tricco et al., 2018 ). The completed checklist for this review is available in Additional file 1 : Appendix 1.

Identification of relevant reports

The search strategy was formulated by the research team, and included an electronic database search and subsequent hand search. The electronic search involved searching twelve electronic databases: Applied Social Sciences Index and Abstract, Criminal Justice Abstracts, Embase, Medline (OVID), National Criminal Justice Reference Service, Open Grey, Psycinfo, Pubmed, Scopus, Social Services Abstracts, Sociological Abstracts, and Web of Science. The search combined condition-related terms (dementia OR Alzheimer*) AND context-related ones (prison OR jail OR gaol OR penitentia* OR penal OR correctional* OR incarcerat*), with no date or language restrictions, and covered the full range of publications up until April 2022. Additional file 2 : Appendix 2 has an example of the search strategy used.

Electronic searches were supplemented by comprehensive hand searching and reference mining. Searches were also undertaken using: search engines; websites related to prisons and/or dementia (for example, Prison Reform Trust); a database from a previous related literature review (Lee et al, 2019 ); recommendations from academic networking sites; contacting prominent authors in the field directly; government-related websites (for example Public Health England, now called Health Security Agency); recent inspection reports for all prisons in England and Wales from Her Majesty’s Inspectorate of Prisons and the Independent Monitoring Board.

Inclusion and exclusion criteria

Papers were considered suitable for inclusion in this review if they met the following criteria:

Setting: Papers should primarily be set in, or pertain to, prisons. Documents solely referring to community services, hospitals or medical facilities that are not part of the prison system were excluded.

People: Papers involving PLiPWD. Research focused only on older people in prison more generally was excluded, as was research which described the disorienting effects of imprisonment more generally, but which was not related to dementia.

Intervention: Some consideration of the treatment, care, support or management of PLiPWD; this can be health or social-care associated, as well as related to the prison overall, and to any individuals, groups or agencies who visit or work with individuals during their time in prison (including family, friends, charities, probation services). Papers which mostly describe prevalence studies, sentencing practices or profiles were excluded.

Study design: All designs were considered for inclusion. Editorials, book reviews, online blogs, press releases, announcements, summaries, newspaper and magazine articles, abstracts and letters were excluded.

The titles, abstracts and full-text of the papers identified by the searches were screened for inclusion in the review. The screening was undertaken by two independent researchers (ST and NS) for inter-rater reliability purposes (Rutter et al., 2010 ). Any differences of opinion on inclusion were resolved between the researchers (ST, NS and SM), and with the Principle Investigator (TVB).

Charting the data

An extraction template was developed for the review, guided by the PICO formula (Richardson et al., 1995 ) and informed by pathway stages and key areas highlighted in the older prisoner pathways toolkit for England and Wales (Department of Health, 2007 ), and the older prisoner pathway formulated for Wales (Welsh Government & Ministry of Justice, 2011 ). Using this extraction template, all of the data was extracted from the included papers by one member of the research team (ST), with a second researcher extracting data from a third of the papers as a check for consistency (SM). Any unresolved issues were related to the Principle Investigator (TVB) for resolution.

Collating, summarising and reporting results

The review was deliberately inclusive of a wide variety of types of papers, which meant that taking a meta-analytic approach to the data was not feasible. Therefore, a narrative approach to summarising and synthesising the findings and recommendations of the included papers was adopted (Popay et al, 2006 ).

Sixty-seven papers were included in this scoping review. The screening process phases conducted by the research team are shown in Fig.  1 .

PRISMA flow diagram

A brief overview of the key features of each of the papers is presented in Table 1 . All but one of the included papers were from high income countries, with the majority from the United Kingdom ( n  = 34), and then the United States ( n  = 15), Australia ( n  = 12), Canada ( n  = 4), Italy ( n  = 1) and India ( n  = 1). The papers were split into types, with twenty-two guidance and inspection documents, and twenty-seven discussion and intervention description papers. Of the eighteen research and review articles with a defined methodology included there were four literature reviews (one was systematic), nine qualitative studies, four mixed-methods studies (one which followed participants up), and one survey-based study.

Areas to consider in the support and management of PLiPWD during their time in prison and upon their release

The pathway through the prison is shown in Fig.  2 , and typically involves: (i) reception into prison; (ii) assessments, and allocation of the person within prison; (iii) time held in prison; (iv) transfers between prisons, and between prisons and other services such as time spent in hospital; and (v) release and preparations for resettlement in the community. There were also a number of (vi) cross-cutting themes which could potentially impact people with dementia living in prison at each stage across the prison pathway.

Dementia prison pathway considerations

(i) Reception

Upon entry into prison, prisoners are subject to an initial reception screening to identify and support immediate health and social care problems, and those in need of further assessment. An induction to prison rules and regulations also typically occurs at this step.

All papers reported that reception screening with appropriate screening tools was important in identifying cognitive difficulties and in establishing a baseline, but implementation seemed to vary (Peacock et al., 2019 ). One study in England and Wales found only 30% of prisons contacted routinely did this (Forsyth et al., 2020 ). Supporting policy and a service/person to refer to directly for further assessment were also highlighted as useful (Brooke & Jackson, 2019 ; Brooke et al., 2018 ; Gaston & Axford, 2018 ; Inspector of Custodial Services, 2015 ; Patterson et al., 2016 ). Proposed cut-offs for this screening were either 50 years of age ( n  = 7), under 55 years ( n  = 1), or 55 years of age ( n  = 7). One paper reported that only a third of prisoners who were offered this screening accepted it, although the reasons for this were not stated (Patel & Bonner, 2016 ). Another paper suggested that a screening programme could have unintended adverse consequences, that could damage already fragile relationships between staff and people living in prison (Moore & Burtonwood, 2019 ). Whilst many screening tools were mentioned, there are currently no tools validated for use in prisons, and many of those used in the community may be inappropriate (Baldwin & Leete, 2012 ; Brooke et al., 2018 ; du Toit et al., 2019 ; Feczko, 2014 ; Forsyth et al., 2020 ; Moore & Burtonwood, 2019 ; National Institute for Health and Care Excellence, 2017 ; Turner, 2018 ; Williams et al., 2012 ). One validation study found that the Six-item Cognitive Impairment Test (6CIT) was not suitably sensitive for use (Forsyth et al., 2020 ). Other difficulties included the limited amount of time and resources available to screen at reception (Christodoulou, 2012 ; Patterson et al., 2016 ; Peacock et al., 2019 ), and that staff lacked ‘familiarity’ with screening tools (Peacock et al., 2019 ).

Only two papers mentioned the induction process (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ) as important. A need for clearly explained information in a dementia-appropriate format (written and verbal) particularly regarding healthcare, and a recommendation that PLiPWD should be regularly reminded of rules and regulations, were suggested.

(ii) Assessment

Following the screening process, the current recommendation is that an initial healthcare assessment takes place in the first seven days after entering prison. During this initial assessment period, although not necessarily within this timeframe, care plans and allocation decisions may also be made regarding where the prisoner is placed within the prison.

An initial older-person-specific health and/or social care assessment or standard process for assessment has been recommended by ten papers, six of which were from government or related bodies. It was also suggested by some papers, that a cognitive assessment should take place at either 50 years ( n  = 6) or 55 years ( n  = 2), which should be repeated every three months ( n  = 3), six months ( n  = 5) or annually ( n  = 12), with the latter including recommendations from NICE guidelines (National Institute for Health and Care Excellence, 2017 ). One study set in England and Wales found that most prisons (60%) that screened older people, did so between 7–12 months (Forsyth et al., 2020 ). Brief and affordable tools were considered more useful (Garavito, 2020 ; Turner, 2018 ), although the Montreal Cognitive Assessment (MOCA) was recommended in the care pathway developed by Forsyth et al. ( 2020 ).

Typically, assessments were conducted by healthcare staff, GPs or a psychologist ( n  = 6), a specialist in-house assessment unit ( n  = 2), or a specific dementia admissions assessment unit ( n  = 4). For further assessment, some prisons had internal teams to refer to ( n  = 5). Forsyth et al. ( 2020 ) recommend referral to external Memory Assessment Services for assessment. A case finding tool was being piloted in one prison (Sindano & Swapp, 2019 ). Assessments included can be found in Table 2 .

Assessments also explored risk and safeguarding (National Institute for Health and Care Excellence, 2017 ; Patterson et al., 2016 ; Welsh Government and Ministry of Justice, 2011 ), environmental impact (National Institute for Health and Care Excellence, 2017 ), capacity (Prison & Probation Ombudsman, 2016 ), work, education, and drug and alcohol use (Welsh Government and Ministry of Justice, 2011 ) and a person’s strengths (Hamada, 2015 ; National Institute for Health and Care Excellence, 2017 ). Prison staff contributed to some assessments of activities of daily living (ADLs) or prison-modified ADLs (Brooke et al., 2018 ; Brown, 2016 ; Dillon et al., 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Forsyth et al., 2020 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Patterson et al., 2016 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ). Challenges to Assessment can be found in Table 3 .

Twelve papers described or recommended care planning post-assessment, in collaboration with PLiPWD and primary care, or a multi-disciplinary team (MDT) of health, social care and prison staff with external specialists healthcare proxies charities or family (Brown, 2016 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Hamada, 2015 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; National Institute for Health and Care Excellence, 2017 ; Patterson et al., 2016 ; Prisons and Probation Ombudsman, 2016 ; Welsh Government and Ministry of Justice, 2011 ). However, it was suggested that prison staff be removed from the decision-making process as the dementia progresses, and be part of the ‘duty of care’ of healthcare staff and services (du Toit & Ng, 2022 ). It was recommended too that care plans be disseminated to prison wing staff (Forsyth et al., 2020 ) and peer supporters (Goulding, 2013 ), and that consent be sought for this (Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ) An ombudsman report in England and Wales noted that care plans for PLiPWD who had died in prison were inadequate (Peacock et al., 2018 ), and of the varying degrees of care planning found by Forsyth et al ( 2020 ), it was described typically as “rudimentary” (p26). Care plans are described further in Table 4 .

Many papers reported that prisons did or should make decisions about where people should be accommodated within the prison after health assessments (Brown, 2016 ; Feczko, 2014 ; Forsyth et al., 2020 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Mistry & Muhammad, 2015 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ), taking age and health into account. However, despite recommendations that PLiPWD should be placed on the ground floor on low bunks for instance (Baldwin & Leete, 2012 ; Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), there were reports that this was not happening (Inspector of Custodial Services, 2015 ). There were also recommendations for allocations to be made across a region to ensure people are appropriately placed in the prison system (Baldwin & Leete, 2012 ; Booth, 2016 ; Gaston & Axford, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Concerns were expressed about the lack of lower category places for PLiPWD (Department of Health, 2007 ), and the lack of guidance regarding placement of people with high support needs (Sindano & Swapp, 2019 ) in England and Wales.

(iii) Within-prison issues

A number of papers reported on a need for policies or frameworks to support staff to identify, assess and support people who may be living with dementia (Brooke et al., 2018 ; Brooke & Jackson, 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Patterson et al., 2016 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ), without which staff have faced difficulties in providing quality care and support (Feczko, 2014 ; Prisons and Probation Ombudsman, 2016 ). Whilst there were some examples of guidance for dementia (Hamada, 2015 ; Patterson et al., 2016 ; Treacy et al., 2019 ; Turner, 2018 ), it was suggested that all policies should be reviewed and amended to ensure that they are appropriate for older people and people living with dementia (Department of Health,  2007 ; Lee et al., 2019 ; Treacy et al., 2019 ). Specific policy areas are described in Table 5 .

Issues around staff training on dementia were discussed in the majority of papers ( n  = 54) Many of these reported that prison staff either lacked training on dementia, or that training was limited ( n  = 16), with one study in England and Wales reporting that only a quarter of prison staff had received such training (Forsyth et al., 2020 ). Perhaps consequently, a number of papers identified that prison staff required some dementia training ( n  = 19). Staff working on a specialist dementia unit reportedly had a comprehensive 40-h training (Brown, 2014 , 2016 ; Gaston & Axford, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ), and it was suggested that more comprehensive training be facilitated for officers, particularly those working with PLiPWD ( n  = 18) and offender managers ( n  = 2). A need for all staff working with PLiPWD to be supervised was also suggested (Gaston & Axford, 2018 ; Maschi et al., 2012 ). Despite a lack of consensus on content and duration (du Toit et al, 2019 ), typically, the staff training undertaken and recommended was in four areas (Table 6 ). It was also recommended that training for healthcare could be more comprehensive and focused on screening, identification, assessment, diagnoses, supervision and intervention training (Baldwin & Leete, 2012 ; Brooke & Jackson, 2019 ; Brown, 2014 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 ; Moll, 2013 ; Moore & Burtonwood, 2019 ; National Institute for Health and Care Excellence, 2017 ; Peacock et al, 2019 ; Treacy et al, 2019 ; Turner, 2018 ; Williams, 2014 ). It is of note that only 21% of healthcare staff in one study in England and Wales reported attending training to identify dementia (Forsyth et al., 2020 ), similar to the figures regarding prison staff in the same study.

Much of the training described in the included papers had been formulated and delivered by dementia- or older people-specific voluntary organisations (Alzheimer’s Society, 2018 ; Brooke et al.  2018 ; Brown, 2016 ; Gaston & Axford, 2018 ; HMP Hull, 2015 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ; Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ). Although it has also been recommended to involve health and social care (Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Ministry of Justice, 2013 ; Treacy et al., 2019 ; Turner, 2018 ), and officers and peer supporters (Brooke & Jackson, 2019 ; Masters et al., 2016 ; National Institute for Health and Care Excellence, 2017 ; Treacy et al., 2019 ) in developing the training. In one study, prison staff were also trained to deliver dementia information sessions to their peers (Treacy et al., 2019 ). A suggestion of video-training packages was also made (du Toit et al., 2019 ). Dementia training typically lacked robust evaluation (Brooke et al., 2018 ), although those available generally reported benefits in their understanding of dementia, relationships, and diagnoses (Goulding, 2013 ; HMP Littlehey, 2016 ; Masters et al., 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ). It was also reported that some prison staff were resistant to working with PLiPWD (Moll, 2013 ), and that resource limitations resulted in training cuts (HMP Hull, 2015 ; Treacy et al., 2019 ).

Offering healthcare across the spectrum for PLiPWDs, from acute to chronic care, with a focus on preventative and long-term care as well as palliative care was recommended by some papers (Brown, 2014 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Peacock et al, 2018 ; Welsh Government and Ministry of Justice, 2011 ; Williams et al., 2012 ). The development of care pathways to guide this were also recommended or formulated (du Toit et al., 2019 ; Forsyth et al., 2020 ; Peacock et al., 2019 ), although the majority (69%) of prisons in one study in England and Wales did not have one (Forsyth et al., 2020 ). Clear and formal links with local hospitals, memory clinics, forensic and community teams for planning, training, advice, support and in-reach were also present or recommended by sixteen research and guidance papers. The amount of healthcare cover in prisons in England and Wales reportedly varied with the function of the prison with largely only local prisons having 24-h healthcare staff (Treacy et al., 2019 ), and most other forms of prison having office-type hours’ healthcare cover – including sex offender prisons where the majority of older prisoners are held (Brown, 2016 ; Correctional Investigator Canada, 2019 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Treacy et al., 2019 ). While specialist services or units for PLiPWD exist in a number of jurisdictions (Baldwin & Leete, 2012 ; Brown, 2016 ; Cipriani et al., 2017 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Treacy et al, 2019 ), more are reportedly needed (Brooke et al., 2018 ; du Toit et al., 2019 ; Forsyth et al., 2020 ; Welsh Government and Ministry of Justice, 2011 ).

Most healthcare teams were reportedly MDT, or this was recommended, alongside joint health and social care working ( n  = 16). A number of healthcare staff acted as the lead for older people in prisons (Department of Health, 2007 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2016 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ), with a recommendation that a dementia-trained nurse should lead any dementia care pathways (Forsyth et al., 2020 ) and indeed it was suggested that healthcare staff in general have training and experience in working with older people (Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Moll, 2013 ; Patterson et al., 2016 ; Public Health England, 2017b ; Treacy et al., 2019 ; Turner, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Whilst one of the recommended roles for healthcare was the prescription and monitoring of medication (Feczko, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Moll, 2013 ), much of the focus was on early identification and diagnosis, and keeping a dementia register (Department of Health, 2007 ; Moll, 2013 ; Patterson et al., 2016 ; Welsh Government and Ministry of Justice, 2011 ), and the use of non-pharmacological approaches. These broadly included: psychological interventions (Goulding, 2013 ; Hamada, 2015 ; Moll, 2013 ; Wilson & Barboza, 2010 ); assistance with ADLs and social care (Feczko, 2014 ; Hamada, 2015 ; Hodel & Sanchez, 2013 ; Maschi, et al., 2012 ; Murray, 2004 ; Prisons and Probation Ombudsman, 2016 ); development and delivery of specialist dementia prison programmes (Brown, 2014 , 2016 ; Hodel & Sanchez, 2013 ; Mistry & Muhammad, 2015 ; Moll, 2013 ; Peacock et al., 2018 ; Wilson & Barboza, 2010 ); reablement and rehabilitation (Welsh Government and Ministry of Justice, 2011 ); relaxation (Wilson & Barboza, 2010 ); safeguarding (Hodel & Sanchez, 2013 ); and cognitive stimulation groups (Moll, 2013 ; Williams, 2014 ). Other possible roles included: training or supporting staff and peer supporters, as reported in fourteen papers, as well as advocacy (Feczko, 2014 ; Peacock et al., 2018 ; Welsh Government and Ministry of Justice, 2011 ), allocation, assessment for offending behaviour groups, risk assessments and disciplinary hearings (Booth, 2016 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Murray, 2004 ; Prisons and Probation Ombudsman, 2016 ). Challenges to Healthcare are noted in Table 7 .

Palliative care

A care pathway for dying people that meets community standards was recommended (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ), as was ensuring that people could choose a preferred place to die (Her Majesty's Prison & Probation Service, 2018 ). Some prisoners were moved to community hospices or hospitals (Brooke & Jackson, 2019 ; Inspector of Custodial Services, 2015 ), or it was felt that they should be (Her Majesty's Prison & Probation Service, 2018 ). Although it was noted that some prisons lack relationships with community hospices or palliative care services and need to foster them (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ).

A number of prisons also reportedly had hospices, particularly in the United States (Brooke et al., 2018 ; Brown, 2016 ; Feczko, 2014 ; Goulding, 2013 ; Williams et al., 2012 ), although these have not been comprehensively evaluated (Williams et al., 2012 ). It was recommended that these be staffed by MDTs (Her Majesty's Prison & Probation Service, 2018 ), including chaplains and nutritionists (Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ), and many included prisoner peer supporters (Brooke et al., 2018 ; Goulding, 2013 ). The use of independent contractors was also suggested as staff-prisoner relationships were considered problematic in some prisons (Williams et al., 2012 ). Regarding family, many hospices were described as allowing more visits (Brooke & Jackson, 2019 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ), including one prison with family accommodation (Her Majesty's Prison & Probation Service, 2018 ). Whilst re-engaging with family was reportedly encouraged (Brown, 2016 ), a lack of support was noted (Correctional Investigator Canada, 2019 ). Suggested improvements include a family liaison officer, providing a list of counselling options, and hosting memorial services (Her Majesty's Prison & Probation Service, 2018 ).

Social care

A social care strategy for older prisoners and a social care lead for all prisons in England and Wales has been recommended (Department of Health, 2007 ; Prisons and Probation Ombudsman, 2016 ). It was reported that MDTs working with PLiPWD should and increasingly do include social workers including specialist units and hospices (Baldwin & Leete, 2012 ; Brooke et al., 2018 ; Brown, 2016 ; Cipriani et al., 2017 ; Goulding, 2013 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Social care roles can be found in Table 8 .

The work may be direct or may be through co-ordinating external agencies or peer supporters (Brooke & Jackson, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Prisons and Probation Ombudsman, 2016 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Clarity in these roles was considered paramount, particularly as uncertainty reportedly continues to exist over who is responsible for meeting prisoners’ social care needs in some prisons in England and Wales despite the passing of the Care Act, 2014 (Dementia Action Alliance, 2017 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ). There was also some ambiguity around the threshold PLiPWD were expected to meet in order to access social care (Forsyth et al., 2020 ). In some instances, personal care was delivered informally by untrained and unsupported prison staff and peer supporters in lieu of suitably trained social care workers (Treacy et al., 2019 ), with issues raised about the unavailability of social care through the night (Forsyth et al., 2020 ). Where social care staff were involved in coordinating personal care for prisoners, it was reported as positive for prisoners and prison staff (Her Majesty's Inspectorate of Prisons, 2016 ; Treacy et al., 2019 ), particularly, in one prison, where social care staff were prison-based (Forsyth et al., 2020 ).

Peer supporters

Prisoner peer supporters were operating in a number of prisons, as reported in 22 papers, and their employment was recommended by a further fourteen. Typically, these were people who had ‘good’ disciplinary and mental health records, and certainly in the US, were longer-serving prisoners. A number of papers indicated the need for peer supporters to receive training in dementia, including awareness and support (Brooke et al., 2018 ; Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ). Comprehensive 36–40 h training on dementia was delivered for those working on specialist units, including one leading to a qualification (Brooke & Jackson, 2019 ; Brown, 2016 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ). Much of the training was developed and delivered by charities, particularly dementia-related ones, as reported in eleven papers. Ongoing support and supervision was offered or recommended by some prisons, provided largely by health or social care staff or charities (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Gaston & Axford, 2018 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ), with informal peer-to-peer support also described (Brown, 2016 ; Gaston & Axford, 2018 ; Treacy et al., 2019 ). The support and supervision received was found to be valuable (Brooke & Jackson, 2019 ; Brown, 2016 ; Treacy et al., 2019 ). Peer-supporter roles are listed in Table 9 .

A number of benefits to: (a) the peer supporters, (b) the prisoners they supported and, (c) the prison, were described, although formal evaluations were lacking (Brown, 2016 ; Christodoulou, 2012 ; Department of Health, 2007 ; du Toit et al., 2019 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). This included: payment, development of skills which could be used on release, positive impact on progression through the system, and on self-confidence and compassion, and the creation of a more humane environment. However, frustration and distress amongst peer supporters largely when untrained and unsupported was also reported (Brooke & Jackson, 2019 ; Brown, 2016 ; Correctional Investigator Canada, 2019 ; Inspector of Custodial Services, 2015 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ), and concerns raised in relation to an over-reliance on peers to do work that it is the statutory duty of health and social care to provide (Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ). This was a particular problem in light of personal care being prohibited for peer supporters in England and Wales (Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ). It is also of note that the role of peer supporter may also attract the opprobrium of other prisoners, with reports that they have been seen as ‘snitches’ or ‘dogs’ in some areas (Brown, 2016 ; Goulding, 2013 ). In addition, in some prisons, the peer supporter role was not advocated due to: fear of litigation; fear of replacing staff with peers; belief that people should be acquiring more transferable skills, since many would be unable to undertake care work in the community due to their offence history (Brown, 2016 ; Goulding, 2013 ).

Accommodation

There were mixed views regarding accommodation for PLiPWD. A continuum of prison accommodation was suggested from independent to 24-h care (including assisted living) (Forsyth et al., 2020 ; Gaston & Axford, 2018 ; Williams et al., 2012 ). A number of papers ( n  = 18) recommended that there should be some form of alternative, more appropriate accommodation developed, potentially regional, including secure facilities possibly with a palliative orientation (Hodel & Sanchez, 2013 ; Mistry & Muhammad, 2015 ; Sfera et al., 2014 ). However, there were concerns about the availability, costs and staffing of specialist units, and distances that family would have to travel to visit despite potential benefits (du Toit et al., 2019 ; Moore & Burtonwood, 2019 ). It was also suggested that PLiPWD should be released to live in the community instead (Correctional Investigator Canada, 2019 ).

Within prisons, there was a debate evident within the papers about whether PLiPWD should be accommodated in separate units or integrated within the general prison population, which had generated little clear evidence and mixed views (Brooke & Jackson, 2019 ; Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ). Authors have suggested that specialist or separate wings focused on older people or those with dementia were safer, met peoples’ needs better, and offered better care, support and programmes than integrated units (Brown, 2014 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Goulding, 2013 ; Maschi et al., 2012 ; Murray, 2004 ; Treacy et al., 2019 ; Williams et al., 2012 ), as long as they were ‘opt-in’ for prisoners and staff (Correctional Investigator Canada, 2019 ; Moll, 2013 ; Treacy et al., 2019 ; Williams et al., 2012 ), and opportunities to get off the wing to socialise with others are provided (Treacy et al., 2019 ). The types of ‘specialist’ accommodation that PLiPWD were living in are reported in Table 10 . It is of note that papers reported a highly limited number of beds available in specialist units (Inspector of Custodial Services, 2015 ; Patterson et al., 2016 ; Turner, 2018 ), and that a number of older prisoner-specific prisons were being closed due to costs (Turner, 2018 ).

Four papers described the benefits of older people and those PLiPWD residing within the general prison population (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ; Williams et al., 2012 ). Those living with dementia reported a benefit from socialising with, and being cared for by, younger people (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ). The presence of older people also reportedly calmed younger prisoners (Dillon et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ). Importantly, removing people from their prison social networks may have a detrimental effect (Williams et al., 2012 ), and living on specialist units can be stigmatising (Treacy et al., 2019 ).

Regime and activities

The maintenance of prisons regimes is the primary focus of prison officers (Brooke & Jackson, 2019 ). However, there was a reported need ( n  = 19) for PLiPWD to have equal access to activities and services including work, education, gym, library and day centres where they exist, as well as a structured and varied regime on the wing on which they were accommodated, and support to access these. This support could include providing adequate seating (Welsh Government and Ministry of Justice, 2011 ), or giving prisoners more time to accomplish activities, and to assist if needed (Brooke & Jackson, 2019 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ). Other recommendations included an overall relaxation of regimes (Gaston & Axford, 2018 ; Treacy et al., 2019 ), an ‘open door’ policy (Brown, 2016 ; Cipriani et al., 2017 ; Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ; Her Majesty's Inspectorate of Prisons, 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ), more visible staff (The King's Fund, 2013 ), and creating a more communal social environment (Christodoulou, 2012 ). On-wing social activities are described in Table 11 .

Having on-wing work available or alternative means for prisoners who are unable to work to make money was also reportedly important (Christodoulou, 2012 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston and Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 , 2016 , 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Murray, 2004 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). It was suggested that people with dementia should have the chance to work if wanted, and adaptations could be made to work programmes or working days made shorter to facilitate this. Some prisons had specific roles which involved lighter, simple, repetitive tasks such as gardening (Baldwin & Leete, 2012 ; Brooke & Jackson, 2019 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Treacy et al., 2019 ). Day centres existed in some prisons, or were thought to be feasible (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ), and it was suggested that attendance at these could constitute meaningful paid activity (Her Majesty's Prison & Probation Service, 2018 ). The centres were largely developed and facilitated by charities, and ran a wide variety of social, therapeutic, recreational, arts and advice-centred activities (Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ).

Equal access to educational activities, including rehabilitation and offending behaviour programmes, was highlighted as important, particularly where attendance is needed to facilitate people’s progression through the system (Booth, 2016 ; Brooke & Jackson, 2019 ; Dillon et al., 2019 ; Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ). Some prisons provided, or felt there was a need for, particular educational activities for PLiPWD and adaptations may be, or have been, made to learning materials and equipment, content and pace (Brooke & Jackson, 2019 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ). Dedicated library sessions have been designated in some prisons, and some libraries can and do stock specialist resources including books, audiobooks, reminiscence packs and archives of local photos, music and DVDs (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ;Treacy et al., 2019 ; Williams, 2014 ). Educational materials could and have been available between sessions to aid memory with distance learning also possible (Brooke & Jackson, 2019 ; Her Majesty's Prison & Probation Service, 2018 ). Suggestions for alternatives for PLiPWD focused on activity and stimulation (du Toit & Ng, 2022 ; Gaston, 2018 ; Her Majesty's Prison & Probation Service, 2018 ), preparing for retirement classes (Department of Health, 2007 ), health promotion (Brooke et al., 2018 ; Christodoulou, 2012 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Maschiet al., 2012 ; Murray, 2004 ; Welsh Government and Ministry of Justice, 2011 ), the arts (Brooke & Jackson, 2019 ) and IT classes (Her Majesty's Prison & Probation Service, 2018 ). Prisoner forums or representative could also be consulted regarding regimes and activities (Moll, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ). Challenges to regimen and activities are described in Table 12 .

Environment

A large number ( n  = 42) of the included papers discussed changes that prisons had made, or should make, to the built environment in order to be more suitable for PLiPWD – in one study in England and Wales, around half of prisons surveyed had made such environmental modifications (Forsyth et al., 2020 ). These focused on: (i) prisoners’ cells, (ii) bathrooms, (iii) dining hall, (iv) outside space and recreation areas, and (v) overall general prison environment (Table 13 ).

Problematically, the age and dementia-inappropriateness of buildings are considered a challenge (Baldwin & Leete, 2012 ; Brown, 2016 ; Dementia Action Alliance, 2017 ; Forsyth et al., 2020 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Mistry & Muhammad, 2015 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ). Difficulties in navigating prisons where everywhere looks the same (Dementia Action Alliance, 2017 ; Murray, 2004 ; Treacy et al., 2019 ), and the lack of budget (HMP Littlehey, 2016 ; HMP Littlehey, 2016 ; Inspector of Custodial Services, 2015 ; Treacy et al., 2019 ) were also reported issues. It was suggested that the use of dementia-friendly environmental checklists could be useful, potentially with input from occupational therapists, health and social care, and dementia charities and in-house education, work and estates departments (Brown, 2014 ; Christodoulou, 2012 ; Dillon et al., 2019 ; Goulding, 2013 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Peacock et al., 2018 ; Sindano & Swapp, 2019 ; Treacy et al., 2019 ). Hope was expressed that newly built prisons would be more dementia-friendly (Dementia Action Alliance, 2017 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ).

Formal policies and procedures should be in place to help maintain links between family and prisoners, and to foster an understanding of the central importance of families particularly for PLiPWD (Her Majesty's Inspectorate of Prisons, 2016 ; Treacy et al., 2019 ). Some papers described how prisons could support contact by: giving help and additional time to make telephone calls and arranging visits in quieter spaces (Her Majesty's Prison & Probation Service, 2018 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ); increasing the number of visits (Jennings, 2009 ); and allowing for accumulated visits or transfers to other prisons for visits closer to home (Her Majesty's Prison & Probation Service, 2018 ). Family communication – additional information can be found in Table 14 .

External organisations

One review suggested that external voluntary agencies were not often contacted or referred to, despite their potential benefits in terms of costs and support for staff and PLiPWDs (du Toit et al., 2019 ). However, other papers reported that charities for PLiPWD, or older people, were involved in (or were recommended to be involved in): designing and/or delivering dementia training; being part of MDTs; informing the design of referral processes, screening, assessment and case finding tools; consulting on environmental design; creating and delivering social care plans (including running activity centres); advice and support; advocacy and; co-facilitating a cognitive stimulation therapy group (Alzheimer’s Society 2018 ; Brooke et al., 2018 ; Brown, 2014 , 2016 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Her Majesty's Inspectorate of Prisons, 2014 ; HMP Hull, 2015 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Moll, 2013 ; Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ; Williams, 2014 ). It was also recommended that external organisations need to have a better knowledge and understanding of prisons and people living in prison, in order to better manage risk, and for clear information sharing protocols (du Toit & Ng, 2022 ).

(iv) Transfers

During the course of their sentence, people in prison may be transferred to other prisons for various reasons or to receive treatment in hospital. The need for MDT transfer plans to be developed was reported (Welsh Government and Ministry of Justice, 2011 ), as was the need to limit the number of prisoner transfers as moving accommodation is likely to have an adverse effect (Her Majesty's Prison & Probation Service, 2018 ; Patterson et al., 2016 ). It was recommended that transfers should take the distance from family and friends into account (Her Majesty's Prison & Probation Service, 2018 ), and that the ‘receiving’ facility (prison or healthcare setting) should be liaised with regarding health and social care, and risk (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ) to ensure continuity of care (Cipriani et al., 2017 ). A standard document transfer protocol was also postulated as useful, as documents need to be forwarded quickly as well (Brown, 2016 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ). At the receiving facility, it was suggested that assessments and care plans should be reviewed on the day of the transfer (Brown, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government, 2014 ), and for re-inductions to be facilitated for prison transfers (Her Majesty's Prison & Probation Service, 2018 ).

(v) Release and resettlement

Most prisoners will be released from prison at the end of their sentence, although a number may die before their time is served. A number of areas were highlighted regarding the release and resettlement of PLiPWD, including the possibility of early release due to dementia.

Early release

A number of papers advocated for compassionate release policies and their actual use, or alternative custodial placements such as halfway houses or secure nursing homes, that would effectively result in the early release of PLiPWD (Brown, 2016 ; Cipriani et al., 2017 ; Correctional Investigator Canada, 2019 ; Dementia Action Alliance, 2017 ; Department of Health, 2007 ; du Toit & Ng, 2022 ; du Toit et al., 2019 ; Fazel et al., 2002 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Hodel & Sanchez, 2013 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Mistry & Muhammad, 2015 ; Pandey et al., 2021 ; Turner, 2018 ; Williams et al., 2012 ). Although, it has also been noted that early release may not be a popular idea for some sections of the community (du Toit et al., 2019 ; Garavito, 2020 ), it was also suggested that raising community awareness of dementia may ameliorate this (du Toit & Ng, 2022 ). It was reported that prisoners with dementia should be considered in any criteria set forth for early release, particularly given the high cost/low risk ratio which they represent (Baldwin & Leete, 2012 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Murray, 2004 ; Williams et al., 2012 ). For prisoners who do not understand the aims of prison, continuing to hold them may be a contravention of human rights and equality laws – particularly where health and social care is inadequate (Baldwin & Leete, 2012 ; Dementia Action Alliance, 2017 ; Fazel et al., 2002 ; Gaston & Axford, 2018 ; Murray, 2004 ). It was also emphasised that the existence of units and programmes for PLiPWD should not be used to legitimise prison as an appropriate place for PLiPWD (Correctional Investigator Canada, 2019 ). More information can be found in Table 15 .

Resettlement

Ten different areas were identified in the literature which related to the issues PLiPWD leaving prison may face on their release and resettlement into the community, these were:

(a) In-prison release preparation

Specific pre-release programmes or services for older people or those living with dementia may be required (Department of Health, 2007 ; Williams et al., 2012 ), with prisoners being cognitively screened prior to release (Goulding, 2013 ), although the latter was only found in 10% of prisons in one study (Forsyth et al., 2020 ). Other suggestions for programme content included: self-efficacy, health, staving off dementia and associated anxiety, accessing services, addressing institutionalisation, setting up email addresses, and the provision of information packs on national, regional and local services and resources (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Williams et al., 2012 ).

It has been suggested that release plans and transitions be facilitated by an MDT including prisoners, the voluntary sector, offender managers, and other appropriate community-based organisations (du Toit et al., 2019 ; Feczko, 2014 ; Goulding, 2013 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ). Recommended plan content included: risk management strategies, health, social care, housing, finance, employment, leisure and voluntary sector considerations (Welsh Government and Ministry of Justice, 2011 ). It was also suggested that Circles of Support and Accountability (CoSA), primarily associated with sex offenders, could be set up for PLiPWD as a means to support those leaving prison and settling back into the community particularly without family support (Her Majesty's Prison & Probation Service, 2018 ).

Challenges to release preparation were identified as: a lack of resources, (Turner, 2018 ) the lack of clarity regarding staff resettlement roles (Inspector of Custodial Services, 2015 ), and the lack of resettlement provision offered at sex offender prisons in England and Wales (Her Majesty's Prison & Probation Service, 2018 ).

A number of papers reported the key role that family and friends can or do play in supporting PLiPWD leaving prison, and that this should be supported or facilitated by prison staff (Brown, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ). Initially this could include encouraging diagnosis disclosure (Dillon et al., 2019 ), using prison leave to maintain relationships (Her Majesty's Prison & Probation Service, 2018 ), involvement in discharge planning (Welsh Government and Ministry of Justice, 2011 ), and placing prison leavers close to family upon release and ensuring family are supported (Correctional Investigator Canada, 2019 ; Gaston & Axford, 2018 ). Where PLiPWD lack family, setting up CoSAs as described above may be useful (Her Majesty's Prison & Probation Service, 2018 ).

(c) Probation

It was suggested that probation staff should have training to work with older people, and that some offender managers could specialise in this work (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ). Probation officers or offender managers are or can be involved in resettlement planning, (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ), arranging accommodation (Inspector of Custodial Services, 2015 ), liaising with agencies such as health care or social services, checking that PLiPWD are accessing these services and disseminating reports of to-be released prisoners to relevant parties (Department of Health, 2007 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ). Importantly, the forwarding of important documents to offender managers by the prison should be routine (Department of Health, 2007 ; Moll, 2013 ). It was also recommended that probation staff should visit people in prison before release if they live out of area (Department of Health, 2007 ). The work of probation services was reportedly hampered by limited resources (Brown, 2016 ).

Continuity of care upon release can be difficult, and it was suggested that it could be a role of prison healthcare to ensure this (including registering with the local GP and dentist (Cipriani et al., 2017 ; Department of Health, 2007 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Welsh Government and Ministry of Justice, 2011 ). There appeared to be some differences regarding the distribution of full healthcare reports to offender managers and other appropriate agencies with some prisons sending them, some only if requested, and some not providing them on grounds of confidentiality (Moll, 2013 ). Typically, it was recommended that it was better for to-be released older prisoners if these reports were disseminated (Department of Health, 2007 ). It was also suggested that healthcare staff in prison and from the community form part of multi-disciplinary release planning, and that these plans include health considerations and healthcare staff advice on issues of accommodation (du Toit & Ng, 2022 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ).

(e) Social care

Some papers reported that social workers can and should be involved in the process of resettlement (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ) and release preparation (Goulding, 2013 ). Continuity of social care arranged with the local authority was also recommended (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ).

(f) Accommodation

Release planning should include plans for accommodation, and involve housing agencies or care services in the community in that planning (Welsh Government and Ministry of Justice, 2011 ). Importantly, people in prison may need help in registering for housing, and their homes may be in need of adaptation in response to their health or social care needs (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ). Nursing homes and other care providing facilities were reported to be reluctant to accommodate people who have been in prison (Brown, 2014 ; Brown, 2016 ; Booth, 2016 ; Correctional Investigator Canada, 2019 ; du Toit et al., 2019 ; Gaston, 2018 ; Garavito, 2020 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ). This was described as particularly the case for those who were living with dementia (Brown, 2014 ; Correctional Investigator Canada, 2019 ; Dillon et al., 2019 ), with further issues reported in accommodating those who have committed sex offences (Brown, 2014 , 2016 ; Dillon et al., 2019 ; Garavito, 2020 ; Inspector of Custodial Services, 2015 ). Concerns regarding the safety of other residents and the views of their families, and the rights of victims in general, were cited as reasons behind these placement difficulties (Brown, 2014 ; Goulding, 2013 ) – one paper reported that there had been community protests (Brown, 2016 ).

It was suggested that prisons need to build better relationships with care providers in the community, which had reportedly been forged by some (Brown, 2016 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ), and that they could also provide education and support to these services (Booth, 2016 ). However, it was also noted that there may be a need for specialist residential units to be created in the community for people released from prison with dementia (Inspector of Custodial Services, 2015 ), with an example of a state-run facility for ex-prisoners in the United States (Goulding, 2013 ), and particular attention for younger ex-prisoners with dementia (Brown, 2014 ). A number of papers reported that if accommodation could not be arranged for people, this largely resulted in them remaining in prison until it was (Correctional Investigator Canada, 2019 ; Goulding, 2013 ; Inspector of Custodial Services, 2015 ; Peacock et al., 2018 ; Soones et al., 2014 ).

(g) Finance

Imprisonment likely leads to a loss of income, meaning that older prisoners who may have served more lengthy sentences are likely to be poorer, particularly if unable to work in prison (Baldwin & Leete, 2012 ; Gaston, 2018 ). Therefore, it was suggested that release planning ought to include issues of finance (Welsh Government and Ministry of Justice, 2011 ). Given that it has been suggested that people in prison should be given advice on pensions and welfare benefits, and help to arrange these (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Goulding, 2013 ), addressing this would seem to be an area of particular use for older people leaving prison who may have additional problems in these areas, and for those who may need assistance in arranging their financial affairs because of their deteriorating health problems.

(h) Employment and education

People’s employment prospects are likely to be impacted upon release from prison, particularly for older people who may have served long sentences (Gaston, 2018 ). Where appropriate, it was recommended that release planning should include issues around employment (Welsh Government and Ministry of Justice, 2011 ), that information packs for people should include sections on education and employment, and that it could be useful to help people make links with the Department for Work and Pensions (Her Majesty's Prison & Probation Service, 2018 ).

(i) Leisure

Leisure activities and resources could be considered in release planning, and included in pre-release information packs for prisoners (Her Majesty's Prison & Probation Service, 2018 ; Welsh Government and Ministry of Justice, 2011 ).

(j) Charities and voluntary sector organisations

It was recommended in a number of papers that charity and voluntary sector organisations working with PLiPWD be involved in release planning (Department of Health, 2007 ; du Toit et al., 2019 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Welsh Government and Ministry of Justice, 2011 ), continuity of care (Moll, 2013 ), and in providing support during the transition and after (du Toit & Ng, 2022 ; Welsh Government and Ministry of Justice, 2011 ). It was also suggested that in general it would be useful for PLiPWD to have contact with these organisations (Department of Health, 2007 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ), and that they may be well-placed to develop information packs for prisoners on release regarding local amenities, services and resources (Her Majesty's Prison & Probation Service, 2018 ).

(vi) Cross-cutting themes

Eight more generalised concerns were also described which had a clear impact on the passage of PLiPWD through prison, on release and resettlement in the community, and on the issues raised thus far in the review.

Principles-philosophy

The principles suggested to underpin the support of PLiPWD are that it should be person-centred, holistic, adhere to human rights and dignity principles, proactive, health promoting, and enabling – making choices but supported if needed (Brown, 2014 , 2016 ; Christodoulou, 2012 ; Cipriani et al., 2017 ; Correctional Investigator Canada, 2019 ; Department of Health, 2007 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2017b ; Her Majesty's Prison & Probation Service, 2018 ; Mackay, 2015 ; Maschi et al., 2012 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ; Wilson & Barboza, 2010 ). Conversely, clashes in philosophies between prison staff, and health and social care staff have been reported with security trumping care in many cases, which can have a negative impact (du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; Mackay, 2015 ; Murray, 2004 ; Patterson et al., 2016 ; Prisons and Probation Ombudsman, 2016 ; Treacy et al., 2019 ; Williams, 2014 ). It was suggested that positioning dementia as more than just a health issue and fostering a whole-prison care-custody model or approach, with clearly defined roles for ‘care’ and ‘custody’, may be useful in resolving this (du Toit & Ng, 2022 ; Public Health England, 2017b ; Welsh Government and Ministry of Justice, 2011 ).

A number of papers ( n  = 15) reported that budget and resource limitations had a variety of negative impacts including difficulties in providing: appropriate assessment, support and accommodation to PLiPWD; specialist accommodations, plans for which were then curtailed; delivering programmes and activities; healthcare cover; and, staff training (Booth, 2016 ; Christodoulou, 2012 ; Correctional Investigator Canada, 2019 ; Dementia Action Alliance, 2017 ; Dillon et al., 2019 ; du Toit et al., 2019 ; du Toit & Ng, 2022 ; Goulding, 2013 ; HMP Hull, 2015 ; Jennings, 2009 ; Mackay, 2015 ; Moll, 2013 ; Moore & Burtonwood, 2019 ; Pandey et al., 2021 ; Patterson et al., 2016 ; Peacock et al., 2018 ; Treacy et al., 2019 ; Turner, 2018 ). Ultimately, lack of resources has reportedly led to a system that is not able to cope appropriately with PLiPWD (Moll, 2013 ; Williams et al., 2012 ; Wilson & Barboza, 2010 ), with associated problems transferring out of the prison system into probation and care systems when people are released (Williams et al., 2012 ).

It has been suggested that PLiPWD in prison should be treated as if they have capacity to make decisions such as giving or withholding consent for treatment, unless it is proven otherwise. This is consistent with legislation such as the Mental Capacity Act (Prisons and Probation Ombudsman, 2016 ). It has been recommended that healthcare staff should conduct capacity assessments if there are concerns (National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ), and be trained to do so (Maschi et al., 2012 ; Welsh Government, 2014 ). It is of note that an ombudsman report showed that PLiPWD who died lacked access to mental capacity assessments (Peacock et al., 2018 ). For PLiPWD, who are likely to lack capacity as their condition progresses, early education about, and development of, advance directives has been advocated (Brown, 2016 ; Cipriani et al., 2017 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Prisons and Probation Ombudsman, 2016 ), and staff should be trained on this (Maschi et al., 2012 ). It has also been suggested that family members, independent mental capacity advocates or healthcare proxies could or should be used for PLiPWD who lack capacity in making care, welfare and financial decisions (Brown, 2016 ; Soones et al., 2014 ), supported by legislation and oversight, as opposed to prison or healthcare staff making decisions (Correctional Investigator Canada, 2019 ).

The issue of ‘risk’ related to PLiPWD revolves around four areas: (i) assessment, (ii) management, (iii) disciplinary procedures, and (iv) safeguarding. Full details can be found in Table 16 .

There were a number of additional facets to risk concerns regarding PLiPWD described in the papers. There were concerns that the lack of understanding of the impact of dementia on people’s behaviour could ultimately lead to people being held in prison for longer periods on account of seemingly transgressive or aggressive behaviour that could in fact be related to their dementia difficulties (Dementia Action Alliance, 2017 ; Mistry & Muhammad, 2015 ; Treacy et al., 2019 ). In one study, a prisoner with dementia was transferred to another prison because staff felt that they were ‘grooming’ an officer (Treacy et al., 2019 ), likely lengthening their overall prison stay. There was also a recurring issue in fatal incidents investigations in England and Wales of prisoners being restrained whilst dying in hospital, a practice described as unnecessary in light of their likely frail state (Peacock et al., 2018 ; Prisons and Probation Ombudsman, 2016 ). One paper suggested linking future accommodation options and considerations for Release on Temporary Licence to a PLiPWD’s risk of reoffending, as well as the severity of their symptoms (Forsyth et al., 2020 ). Moore and Burtonwood ( 2019 ) also observed that a lack of risk assessment protocols was a barrier to release of PLiPWD., and as Table 16 suggests, a comprehensive risk assessment, applied by appropriately trained staff should make health and its impact on future offending more salient to aid this.

There were recommendations that PLiPWD should have the opportunity to make choices in their treatment and care. This included input into care plans or making informed decisions about their care (Department of Health, 2007 ; du Toit & Ng, 2022 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ), as well as developing advance directives particularly early in a person’s sentence (Brown, 2016 ; Cipriani et al., 2017 ; Inspector of Custodial Services, 2015 ; Maschi et al., 2012 ; Pandey et al., 2021 ; Peacock et al., 2019 ; Prisons and Probation Ombudsman, 2016 ), and choosing ‘preferred’ places to die (Her Majesty's Prison & Probation Service, 2018 ).

Protected characteristics

There was a reported need for culturally appropriate assessments, treatment and activities (Brooke et al., 2018 ; Department of Health, 2007 ; Hamada, 2015 ; Welsh Government and Ministry of Justice, 2011 ), spiritual support (Welsh Government and Ministry of Justice, 2011 ), multilingual information (Welsh Government and Ministry of Justice, 2011 ), and the recognition of gender differences in dementia healthcare needs (Brown, 2014 ; Department of Health, 2007 ; Williams et al., 2012 ). It was also highlighted that racism makes the experience of living with dementia in prison more problematic (Brooke et al., 2018 ; Brown, 2014 ; Correctional Investigator Canada, 2019 ). There were some examples of policy and practice within prisons which considered some protected characteristics: assessment tools in different languages (Patterson et al., 2016 ), additional support for PLiPWD to plan care (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), and the development of culturally appropriate care planning (Hamada, 2015 ). Hamada ( 2015 ) also advocated assessment and treatment that was culturally ‘competent’ and respectful, and which acknowledged the importance of culture and diversity.

An overall need to tackle dementia- and age-related stigma was also reported in some papers, and the need to foster cultures that are age-respectful should be reflected in staff training (Department of Health, 2007 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ), In addition, practices which openly discriminate such as the lack of: dedicated dementia resources (Turner, 2018 ), appropriate lower category prison places (Department of Health, 2007 ; Welsh Government and Ministry of Justice, 2011 ), and appropriate accommodation on release, which at times prevents release, should also be challenged (Correctional Investigator Canada, 2019 ; Forsyth et al., 2020 ; Ministry of Justice, 2013 ; Prisons and Probation Ombudsman, 2016 ). There was also a lack of research into the interaction between protected characteristics and dementia in prison (Brooke & Jackson, 2019 ; Treacy et al., 2019 ; Williams et al., 2012 ).

Collaboration

Many papers advocated the need for prisons and specialist dementia units to adopt a collaborative MDT approach drawing from staff teams across the prison regarding: the identification and support of prisoners with dementia, care planning, the disciplinary process, the development, dissemination and implementation of policy, and in environmental change and the building of new prisons (Brooke et al., 2018 ; Brown, 2014 , 2016 ; Christodoulou, 2012 ; Cipriani et al., 2017 ; Dillon et al., 2019 ; Department of Health, 2007 ; Feczko, 2014 ; Forsyth et al., 2020 ; Gaston & Axford, 2018 ; Her Majesty's Inspectorate of Prisons, 2014 , 2016 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Inspector of Custodial Services, 2015 ; Moll, 2013 ; Patterson et al., 2016 ; Peacock et al., 2018 ; Peacock, 2019 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; The King’s Fund 2013 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 , 2014 ; Williams, 2014 ). There were examples of prisoners collaborating with staff in the care of PLiPWD as peer supporters, and having joint staff-prisoner supervision and training (Brooke & Jackson, 2019 ), of joint staff-prisoner wing meetings in one prison (Treacy et al., 2019 ), and of the co-designing of services and activities in others (Her Majesty's Prison & Probation Service, 2018 ; Treacy et al., 2019 ). It was suggested that this collaborative way of working should be supported by an information sharing protocol, clear definitions of staff and peer supporter roles and responsibilities, and training (Brooke & Jackson, 2019 ; Dillon et al., 2019 ; du Toit & Ng, 2022 ; HMP Littlehey, 2016 ; Turner, 2018 ). It was reported that there had been a lack of communication and coordination of this process in some prisons which had a negative impact on all involved (Brooke & Rybacka, 2020 ; Forsyth et al., 2020 ; Moll, 2013 ; Prisons and Probation Ombudsman, 2016 ).

It was also suggested that the prisons collaborate with healthcare, hospice and dementia specialists in the community and with external charitable organisations (Brooke et al., 2018 ; Brown, 2014 ; Cipriani et al., 2017 ; du Toit & Ng, 2022 ; Gaston, 2018 ; Gaston & Axford, 2018 ; Goulding, 2013 ; HMP Hull, 2015 ; HMP Littlehey, 2016 ; Her Majesty's Prison & Probation Service, 2018 ; Moll, 2013 ; Peacock, 2019 ; Prisons and Probation Ombudsman, 2016 ; Sindano & Swapp, 2019 ; Tilsed, 2019 ; Treacy et al., 2019 ; Welsh Government and Ministry of Justice, 2011 ; Williams, 2014 ). In addition, inter-prison networks were recommended to be developed to share good practice across prisons (Dementia Action Alliance, 2017 ; Moll, 2013 ; Peacock et al., 2019 ; Prisons and Probation Ombudsman, 2016 ).

Information-sharing

A number of papers ( n  = 7) recommended the need for a clear information sharing protocol regarding the assessment and support of PLiPWD (Brooke et al., 2018 ; Dillon et al., 2019 ; Department of Health, 2007 ; Goulding, 2013 ; Moll, 2013 ; Tilsed, 2019 ; Welsh Government and Ministry of Justice, 2011 ), or a register (Forsyth et al., 2020 ). Particular attention to the interface between healthcare and prison staff and peer supporters was suggested, where it has been reported that privacy regulations have sometimes prevented contributions to collateral histories (Feczko, 2014 ) and the sharing of care plans, impairing their ability to offer appropriate support (Inspector of Custodial Services, 2015 ). Also, it may be against the wishes of the person with dementia, and informed consent should be sought (Forsyth et al., 2020 ; Moll, 2013 ). This lack of information can have a detrimental effect on a person’s health and wellbeing (Brown, 2014 , 2016 ; Feczko, 2014 ; Inspector of Custodial Services, 2015 ), and so discussion of this was highlighted as important, particularly where the safety of the person or others were concerned (National Institute for Health and Care Excellence, 2017 ). A care plan which gives only very basic information to staff and peer supporters was used in a couple of prisons (Goulding, 2013 ; Williams, 2014 ).

There also appeared to be variance with respect to whether healthcare staff disclose a dementia diagnosis to the person diagnosed with dementia. A couple of prisons’ policy was to share a diagnosis and involve family in doing so (Maschi et al., 2012 ; Welsh Government and Ministry of Justice, 2011 ; Wilson & Barboza, 2010 ), however, in one prison disclosed if a person was judged to be able to cope with it, and another only disclosed if asked (Brown, 2016 ). The importance of disclosure to family allowing them to contribute to assessments, planning and support was also emphasised in some papers (Brown, 2016 ; Dillon et al., 2019 ; National Institute for Health and Care Excellence, 2017 ; Welsh Government and Ministry of Justice, 2011 ).

This review has explored the literature regarding all parts of the custodial process and its impact on people living in prison with cognitive impairment and dementia, which includes: reception, assessment, allocation, training, policy, healthcare, accommodation, adaptation, routine, access to family and external agencies, transfer and resettlement. We found evidence that problems had been identified in each of these parts of the process. We also identified a number of cross-cutting themes which interacted with the issues identified across the prison journey including: principles or philosophy regarding care; capacity; resources; considerations of risk; scope for choice; peoples’ protected characteristics; collaboration; and, information sharing. Broadly, our findings were similar to those found in previous reviews, regarding the problems with the prison process identified, and the lack of robust outcomes, and policy guidance regarding PLiPWD (Brooke and Rybacka, 2020 ; Peacock et al., 2019 ).

The aim of this review was to identify areas of good practice and for recommendations that could inform the development of prison dementia care pathways. There is a considerable breadth to the findings, but the main recommendations that have arisen from the review are:

To screen prisoners for cognitive difficulties at reception, from either 50 or 55 years

An initial older-person specific health and social care assessment, post-screening – from either 50 or 55 years, and repeated (from 3 – 12 months)

A spectrum of healthcare to be delivered including preventative, long-term and palliative care, with continuity of care upon release, and in tandem with social care

Mixed views about appropriate accommodation, but it needs to run along a continuum from independent living to 24-h care, with decisions possibly made after health assessments

Environments need to be made more older-person or dementia friendly, using checklists available, and with the voluntary sector as potential partners

A need for prison staff training on dementia, and further training for healthcare staff

The use of peer supporters was broadly reported positively, and were seemingly frequently used. However, there needs to be adequate training and support, and not to be used to do the work that is the statutory duty of health and social care staff

Equal access to activities and services, especially programmes which help people move through the system (such as offending behaviour), as well as opportunities to earn additional monies, and that provide structure and routine on wings

The maintenance of family links, and for families to be supported, are important for PLiPWD, and may be particularly so on release and resettlement

Prisons may also need to work with external care agencies to ensure placements upon release, or alternative specialist care facilities may need to be created

The main barriers to implementing these recommendations are a lack of policy or guidance at local, regional and national levels to support staff in working with PLiPWD, and also the lack of budget and resources available. The latter would also include infrastructure issues, such that a number of prisons are not appropriate for people living with dementia, and could be expensive to modify to become so, coupled with a lack of currently available alternative facilities for PLiPWD to be released to in the community. The lack of use of compassionate release is also an issue here, including during the COVID-19 pandemic, with only 54 people released (Halliday & Hewson, 2022 ). Lastly, the roles that each professional and peer group had regarding PLiPWD needed clarification in some prisons, including some resolution of the ‘clash’ of philosophies (control v care) underpinning this.

In terms of ‘solutions’, multiple organisations have advocated for years for the need for national policy to assist prisons with older people in prison, including those living with dementia (Cornish et al., 2016 ; HM Inspectorate of Prisons, 2004 , 2019 ; Prisons & Probation Ombudsman, 2016 , 2017 ). This was eventually accepted and commissioned by the UK government, although it has not been released as yet (Justice Committee, 2020 ). It has also been suggested that at a more local level, existing policies could be adapted to be more appropriate for PLiPWD – such as restraint policies for frail prisoners, and disciplinary procedures which reflect the impact that dementia may have on behaviour (Department of Health, 2007 ; Treacy et al., 2019 ). Considerations around capacity and consent would need to be weaved in, as well as a focus on the intersection with other protected characteristics. These adaptations would also need to extend to services and activities to ensure that people have equal access and opportunities. A number of reports highlighted the contribution that greater collaboration with partners in external health and social care teams could have, as well as partnerships with the voluntary sector. These could potentially assist in multiple areas including training staff and peer supporters, providing activities, assisting release preparation, at a relatively low cost, to high benefit. There were some recommendations that prisons adopt a whole-prison approach to dementia that focuses on being person-centred, health and human rights focused that may help to ameliorate some differences in philosophical approach between various staff and peer groups in prisons.

A number of potential areas for future research were also indicated by the literature, which would also support the development of prison pathways. These would include: (i) induction to prison, and (ii) release and resettlement from prison, which are important beginning and end-points, but which are under-researched; (iii) the validation of a screening tool for use in prisons, and the development or adaptation of prison-specific health and social care assessments; (iv) the interaction of protected characteristics and dementia, and the need for more culturally and gender aware pathways; (v) the paucity of research conducted in low and middle-income countries, that needs to be addressed; (vi) dementia and age-related stigma in prisons; and (vii) evaluations of all elements of the prison pathway for PLiPWD to undertaken including training, the role of peer supporters, and targeted programmes.

Strengths and limitations of the review

One key strength of this review is its comprehensiveness, particularly as it includes much grey literature. Given the lack of robust evaluation in this area, it was felt that this was necessary to represent the volume of work that has nonetheless taken place. There are, however, a number of limitations of this review. Firstly, despite the use of broad search terms, there may be the possibility that some relevant research was missed, either because of deficiencies in our searches or because of publication bias. Additionally, whilst there are twenty-two guidance and inspection documents included in this review, it is possible that some grey literature might also remain unidentified, particularly outside of the UK where the review was undertaken. Secondly, this review may be subject to a selection bias, as the yielded search results might have included literature that were excluded but which may have indirectly impacted upon the care pathways elements explored in the review. There is also a language bias, and whilst this may reflect the languages spoken by the review team members, it is also reflective of the “northern epistemic hegemony” (Aas, 2012 ), that also may have resulted in the review being largely populated by papers from high income countries. Thirdly, no formal assessment of study quality was undertaken. This is in keeping with scoping review methodology which focuses on breadth, but is nonetheless an important shortcoming inherent in scoping reviews more generally (Arksey & O’Malley, 2005 ).

We have completed the most comprehensive review of the literature on PLiPWD in prisons to date that we have found, including a synthesis of the extensive grey literature, and found important gaps in the literature. Our review includes a mixture of academic research, policy and position papers which identified an increasing number of prisoners with dementia or cognitive impairment as an issue, but there were more limited descriptions of what should be done, and even less describing implementation of these. Most of the literature came from developed nations where extensive assessment and care services are in place for PWD in the community, although a key question is whether prison populations are given easy access to these existing services or whether bespoke services for prisoners are required. We suggest this literature now needs to be drawn together to inform interventions for PLiPWD in the criminal justice system which can be piloted and evaluated, and inform the development of robust dementia care pathways for prisons.

Availability of data and materials

All data and materials used in this review are included in this article and its appendices.

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Acknowledgements

We would like to thank all the funders for their contributions towards this review. We also would like to thank the key stakeholders, especially the prison advisors and old age psychiatry and care advisors, who contributed towards shaping and contextualising this evidence review.

This is a summary of research which was partly funded by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England - previously, the Collaboration for Leadership in Applied Health Research and Care East of England – and the Cambridgeshire and Peterborough NHS Foundation Trust (CPFT), as part of the wider prison care programme. The views expressed are those of the author(s).

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Treacy, S., Martin, S., Samarutilake, N. et al. Dementia care pathways in prisons – a comprehensive scoping review. Health Justice 12 , 2 (2024). https://doi.org/10.1186/s40352-023-00252-7

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Leadership Effectiveness in Healthcare Settings: A Systematic Review and Meta-Analysis of Cross-Sectional and Before–After Studies

Vincenzo restivo.

1 Department of Health Promotion, Maternal and Infant Care, Internal Medicine and Medical Specialties (PROMISE) “G. D’Alessandro”, University of Palermo, Via del Vespro 133, 90127 Palermo, Italy

Giuseppa Minutolo

Alberto battaglini.

2 Vaccines and Clinical Trials Unit, Department of Health Sciences, University of Genova, Via Antonio Pastore 1, 16132 Genova, Italy

Alberto Carli

3 Santa Chiara Hospital, Largo Medaglie d’oro 9, 38122 Trento, Italy

Michele Capraro

4 School of Public Health, Vita-Salute San Raffaele University, Via Olgettina 58, 20132 Milan, Italy

Maddalena Gaeta

5 Department of Public Health, Experimental and Forensic Medicine, University of Pavia, Via Forlanini 2, 27100 Pavia, Italy

Cecilia Trucchi

6 Planning, Epidemiology and Prevention Unit, Liguria Health Authority (A.Li.Sa.), IRCCS San Martino Hospital, Largo R. Benzi 10, 16132 Genoa, Italy

Carlo Favaretti

7 Centre on Leadership in Medicine, Catholic University of the Sacred Heart, Largo F. Vito 1, 00168 Rome, Italy

Francesco Vitale

Alessandra casuccio, associated data.

Data will be available after writing correspondence to the author.

To work efficiently in healthcare organizations and optimize resources, team members should agree with their leader’s decisions critically. However, nowadays, little evidence is available in the literature. This systematic review and meta-analysis has assessed the effectiveness of leadership interventions in improving healthcare outcomes such as performance and guidelines adherence. Overall, the search strategies retrieved 3,155 records, and 21 of them were included in the meta-analysis. Two databases were used for manuscript research: PubMed and Scopus. On 16th December 2019 the researchers searched for articles published in the English language from 2015 to 2019. Considering the study designs, the pooled leadership effectiveness was 14.0% (95%CI 10.0–18.0%) in before–after studies, whereas the correlation coefficient between leadership interventions and healthcare outcomes was 0.22 (95%CI 0.15–0.28) in the cross-sectional studies. The multi-regression analysis in the cross-sectional studies showed a higher leadership effectiveness in South America (β = 0.56; 95%CI 0.13, 0.99), in private hospitals (β = 0.60; 95%CI 0.14, 1.06), and in medical specialty (β = 0.28; 95%CI 0.02, 0.54). These results encourage the improvement of leadership culture to increase performance and guideline adherence in healthcare settings. To reach this purpose, it would be useful to introduce a leadership curriculum following undergraduate medical courses.

1. Introduction

Over the last years, patients’ outcomes, population wellness and organizational standards have become the main purposes of any healthcare structure [ 1 ]. These standards can be achieved following evidence-based practice (EBP) for diseases prevention and care [ 2 , 3 ] and optimizing available economical and human resources [ 3 , 4 ], especially in low-industrialized geographical areas [ 5 ]. This objective could be reached with effective healthcare leadership [ 3 , 4 ], which could be considered a network whose team members followed leadership critically and motivated a leader’s decisions based on the organization’s requests and targets [ 6 ]. Healthcare workers raised their compliance towards daily activities in an effective leadership context, where the leader succeeded in improving membership and performance awareness among team members [ 7 ]. Furthermore, patients could improve their health conditions in a high-level leadership framework. [ 8 ] Despite the leadership benefits for healthcare systems’ performance and patients’ outcomes [ 1 , 7 ], professionals’ confidence would decline in a damaging leadership context for workers’ health conditions and performance [ 4 , 9 , 10 ]. On the other hand, the prevention of any detrimental factor which might worsen both team performance and healthcare systems’ outcomes could demand effective leadership [ 4 , 7 , 10 ]. However, shifting from the old and assumptive leadership into a more effective and dynamic one is still a challenge [ 4 ]. Nowadays, the available evidence on the impact and effectiveness of leadership interventions is sparse and not systematically reported in the literature [ 11 , 12 ].

Recently, the spreading of the Informal Opinion Leadership style into hospital environments is changing the traditional concept of leadership. This leadership style provides a leader without any official assignment, known as an “opinion leader”, whose educational and behavioral background is suitable for the working context. Its target is to apply the best practices in healthcare creating a more familiar and collaborative team [ 2 ]. However, Flodgren et al. reported that informal leadership interventions increased healthcare outcomes [ 2 ].

Nowadays, various leadership styles are recognized with different classifications but none of them are considered the gold standard for healthcare systems because of heterogenous leadership meanings in the literature [ 4 , 5 , 6 , 12 , 13 ]. Leadership style classification by Goleman considered leaders’ behavior [ 5 , 13 ], while Chen DS-S proposed a traditional leadership style classification (charismatic, servant, transactional and transformational) [ 6 ].

Even if leadership style improvement depends on the characteristics and mission of a workplace [ 6 , 13 , 14 ], a leader should have both a high education in healthcare leadership and the behavioral qualities necessary for establishing strong human relationships and achieving a healthcare system’s goals [ 7 , 15 ]. Theoretically, any practitioner could adapt their emotive capacities and educational/working experiences to healthcare contexts, political lines, economical and human resources [ 7 ]. Nowadays, no organization adopts a policy for leader selection in a specific healthcare setting [ 15 ]. Despite the availability of a self-assessment leadership skills questionnaire for aspirant leaders and a pattern for the selection of leaders by Dubinsky et al. [ 15 ], a standardized and universally accepted method to choose leaders for healthcare organizations is still argued over [ 5 , 15 ].

Leadership failure might be caused by the arduous application of leadership skills and adaptive characteristics among team members [ 5 , 6 ]. One of the reasons for this negative event could be the lack of a standardized leadership program for medical students [ 16 , 17 ]. Consequently, working experience in healthcare settings is the only way to apply a leadership style for many medical professionals [ 12 , 16 , 17 ].

Furthermore, the literature data on leadership effectiveness in healthcare organizations were slightly significant or discordant in results. Nevertheless, the knowledge of pooled leadership effectiveness should motivate healthcare workers to apply leadership strategies in healthcare systems [ 12 ]. This systematic review and meta-analysis assesses the pooled effectiveness of leadership interventions in improving healthcare workers’ and patients’ outcomes.

2. Materials and Methods

A systematic review and meta-analysis was conducted according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) Statement guidelines [ 18 ]. The protocol was registered on the PROSPERO database with code CRD42020198679 on 15 August 2020. Following these methodological standards, leadership interventions were evaluated as the pooled effectiveness and influential characteristic of healthcare settings, such as leadership style, workplace, settings and the study period.

2.1. Data Sources and Search Strategy

PubMed and Scopus were the two databases used for the research into the literature. On 16th December 2019, manuscripts in the English language published between 2015 and 2019 were searched by specific MeSH terms for each dataset. Those for PubMed were “leadership” OR “leadership” AND “clinical” AND “outcome” AND “public health” OR “public” AND “health” OR “public health” AND “humans”. Those for Scopus were “leadership” AND “clinical” AND “outcome” AND “public” AND “health”.

2.2. Study Selection and Data Extraction

In accordance with the PRISMA Statement, the following PICOS method was used for including articles [ 18 ]: the target population was all healthcare workers in any hospital or clinical setting (Population); the interventions were any leader’s recommendation to fulfil quality standards or performance indexes of a healthcare system (Intervention) [ 19 ]; to be included, the study should have a control group or reference at baseline as comparison (Control); and any effectiveness measure in terms of change in adherence to healthcare guidelines or performances (Outcome). In detail, any outcome implicated into healthcare workers’ capacity and characteristics in reaching a healthcare systems purposes following the highest standards was considered as performance [ 19 ]. Moreover, whatever clinical practices resulted after having respected the recommendations, procedures or statements settled previously was considered as guideline adherence [ 20 ]. The selected study design was an observational or experimental/quasi-experimental study design (trial, case control, cohort, cross-sectional, before-after study), excluding any systematic reviews, metanalyses, study protocol and guidelines (Studies).

The leaders’ interventions followed Chen’s leadership styles classification [ 6 ]. According to this, the charismatic leadership style can be defined also as an emotive leadership because of members’ strong feelings which guide the relationship with their leader. Its purpose is the improvement of workers’ motivation to reach predetermined organizational targets following a leader’s planning strategies and foresights. Servant leadership style is a sharing leadership style in whose members can increase their skills and competences through steady leader support, and they have a role in an organization’s goals. The transformational leadership style focuses on practical aspects such as new approaches for problem solving, new interventions to reach purposes, future planning and viewpoints sharing. Originality in a transformational leadership style has a key role of improving previous workers’ and healthcare system conditions in the achievement of objectives. The transactional leadership style requires a working context where technical skills are fundamental, and whose leader realizes a double-sense sharing process of knowledge and tasks with members. Furthermore, workers’ performances are improved through a rewarding system [ 6 ].

In this study, the supervisor trained the research team for practical manuscript selection and data extraction. The aim was to ensure data homogeneity and to check the authors’ procedures for selection and data collection. The screening phase was performed by four researchers reading each manuscript’s title and abstract independently and choosing to exclude any article that did not fulfill the inclusion criteria. Afterwards, the included manuscripts were searched for in the full text. They were retrieved freely, by institutional access or requesting them from the authors.

The assessment phase consisted of full-text reading to select articles following the inclusion criteria. The supervisor solved any contrasting view about article selection and variable selection.

The final database was built up by collecting the information from all included full-text articles: author, title, study year, year of publication, country/geographic location, study design, viability and type of evaluation scales for leadership competence, study period, type of intervention to improve leadership awareness, setting of leader intervention, selection modality of leaders, leadership style adopted, outcomes assessed such as guideline adherence or healthcare workers’ performance, benefits for patients’ health or patients’ outcomes improvement, public or private hospitals or healthcare units, ward specialty, intervention in single specialty or multi-professional settings, number of beds, number of healthcare workers involved in leadership interventions and sample size.

Each included article in this systematic review and meta-analysis received a standardized quality score for the specific study design, according to Newcastle–Ottawa, for the assessment of the quality of the cross-sectional study, and the Study Quality Assessment Tools by the National Heart, Lung, and Blood Institute were used for all other study designs [ 21 , 22 ].

2.3. Statistical Data Analysis

The manuscripts metadata were extracted in a Microsoft Excel spreadsheet to remove duplicate articles and collect data. The included article variables for the quantitative meta-analysis were: first author, publication year, continent of study, outcome, public or private organization, hospital or local healthcare unit, surgical or non-surgical ward, multi- or single-professionals, ward specialty, sample size, quality score of each manuscript, leadership style, year of study and study design.

The measurement of the outcomes of interest (either performance or guidelines adherence) depended on the study design of the included manuscripts in the meta-analysis:

• for cross-sectional studies, the outcome of interest was the correlation between leadership improvement and guideline adherence or healthcare performance;
• the outcome derived from before–after studies or the trial was the percentage of leadership improvement intervention in guideline adherence or healthcare performance;
• the incidence occurrence of improved results among exposed and not exposed healthcare workers of leadership interventions and the relative risks (RR) were the outcomes in cohort studies;
• the odds ratio (OR) between the case of healthcare workers who had received a leadership intervention and the control group for case-control studies.

Pooled estimates were calculated using both the fixed effects and DerSimonian and Laird random effects models, weighting individual study results by the inverse of their variances [ 23 ]. Forest plots assessed the pooled estimates and the corresponding 95%CI across the studies. The heterogeneity test was performed by a chi-square test at a significance level of p < 0.05, reporting the I 2 statistic together with a 25%, 50% or 75% cut-off, indicating low, moderate, and high heterogeneity, respectively [ 24 , 25 ].

Subgroup analysis and meta-regression analyses explored the sources of significant heterogeneity. Subgroup analysis considered the leadership style (charismatic, servant, transactional and transformational), continent of study (North America, Europe, Oceania), median cut-off year of study conduction (studies conducted between 2005 and 2011 and studies conducted between 2012 and 2019), type of hospital organization (public or private hospital), type of specialty (surgical or medical specialty) and type of team (multi-professional or single-professional team).

Meta-regression analysis considered the following variables: year of starting study, continent of study conduction, public or private hospital, surgical or non-surgical specialty ward, type of healthcare service (hospital or local health unit), type of healthcare workers involved (multi- or single-professional), leadership style, and study quality score. All variables included in the model were relevant in the coefficient analysis.

To assess a potential publication bias, a graphical funnel plot reported the logarithm effect estimate and related the standard error from each study, and the Egger test was performed [ 26 , 27 ].

All data were analyzed using the statistical package STATA/SE 16.1 (StataCorp LP, College 482 Station, TX, USA), with the “metan” command used for meta-analysis, and “metafunnel”, “metabias” and “confunnel” for publication bias assessment [ 28 ].

3.1. Studies Characteristics

Overall, the search strategies retrieved 3,155 relevant records. After removing 570 (18.1%) duplicates, 2,585 (81.9%) articles were suitable for the screening phase, of which only 284 (11.0%) articles were selected for the assessment phase. During the assessment phase, 263 (92.6%) articles were excluded. The most frequent reasons of exclusion were the absence of relevant outcomes ( n = 134, 51.0%) and other study designs ( n = 61, 23.2%). Very few articles were rejected due to them being written in another language ( n = 1, 0.4%), due to the publication year being out of 2015–2019 ( n = 1, 0.4%) or having an unavailable full text ( n = 3, 1.1%).

A total of 21 (7.4%) articles were included in the qualitative and quantitative analysis, of which nine (42.9%) were cross-sectional studies and twelve (57.1%) were before and after studies ( Figure 1 ).

Flow-chart of selection manuscript phases for systematic review and meta-analysis on leadership effectiveness in healthcare workers.

The number of healthcare workers enrolled was 25,099 (median = 308, IQR = 89–1190), including at least 2,275 nurses (9.1%, median = 324, IQR = 199–458). Most of the studies involved a public hospital ( n = 16, 76.2%). Among the studies from private healthcare settings, three (60.0%) were conducted in North America. Articles which analyzed servant and charismatic leadership styles were nine (42.9%) and eight (38.1%), respectively. Interventions with a transactional leadership style were examined in six (28.6%) studies, while those with a transformational leadership style were examined in five studies (23.8%). Overall, 82 healthcare outcomes were assessed and 71 (86.6%) of them were classified as performance. Adherence-to-guidelines outcomes were 11 (13.4%), which were related mainly to hospital stay ( n = 7, 64.0%) and drug administration ( n = 3, 27.0%). Clements et al. and Lornudd et al. showed the highest number of outcomes, which were 19 (23.2%) and 12 (14.6%), respectively [ 29 , 30 ].

3.2. Leadership Effectiveness in before–after Studies

Before–after studies ( Supplementary Table S1 ) involved 22,241 (88.6%, median = 735, IQR = 68–1273) healthcare workers for a total of twelve articles, of which six (50.0%) consisted of performance and five (41.7%) of guidelines adherence and one (8.3%) of both outcomes. Among healthcare workers, there were 1,294 nurses (5.8%, median = 647, IQR = 40–1,254). Only the article by Savage et al. reported no number of involved healthcare workers [ 31 ].

The number of studies conducted after 2011 or between 2012–2019 was seven (58.3%), while only one (8.3%) article reported a study beginning both before and after 2011. Most of studies were conducted in Northern America ( n = 5, 41.7%). The servant leadership style and charismatic leadership style were the most frequently implemented, as reported in five (41.7%) and four (33.3%) articles, respectively. Only one (8.3%) study adopted a transformational leadership style.

The pooled effectiveness of leadership was 14.0% (95%CI 10.0–18.0%), with a high level of heterogeneity (I 2 = 99.9%, p < 0.0001) among the before–after studies ( Figure 2 ).

Effectiveness of leadership in before after studies. Dashed line represents the pooled effectiveness value [ 29 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 ].

The highest level of effectiveness was reported by Weech-Maldonado R et al. with an effectiveness of 199% (95%CI 183–215%) based on the Cultural Competency Assessment Tool for Hospitals (CCATH) [ 39 ]. The effectiveness of leadership changed in accordance with the leadership style ( Supplementary Figure S1 ) and publication bias ( Supplementary Figure S2 ).

Multi-regression analysis indicated a negative association between leadership effectiveness and studies from Oceania, but this result was not statistically significant (β = −0.33; 95% IC −1.25, 0.59). On the other hand, a charismatic leadership style affected healthcare outcomes positively even if it was not statistically relevant (β = 0.24; 95% IC −0.69, 1.17) ( Table 1 ).

Correlation coefficients and multi-regression analysis of leadership effectiveness in before–after studies.

3.3. Leadership Effectiveness in Cross Sectional Studies

A total of 2858 (median = 199, IQR = 110–322) healthcare workers were involved in the cross-sectional studies ( Supplementary Table S2 ), of which 981 (34.3%) were nurses. Most of the studies were conducted in Asia ( n = 4, 44.4%) and North America ( n = 3, 33.3%). All of the cross-sectional studies regarded only the healthcare professionals’ performance. Multi-professional teams were involved in seven (77.8%) studies, and they were more frequently conducted in both medical and surgical wards ( n = 6, 66.7%). The leadership styles were equally distributed in the articles and two (22.2%) of them examined more than two leadership styles at the same time.

The pooled effectiveness of the leadership interventions in the cross-sectional studies had a correlation coefficient of 0.22 (95%CI 0.15–0.28), whose heterogeneity was remarkably high (I 2 = 96.7%, p < 0.0001) ( Figure 3 ).

Effectiveness of leadership in cross-sectional studies. Dashed line represents the pooled effectiveness value [ 30 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 ].

The effectiveness of leadership in the cross-sectional studies changed in accordance with the leadership style ( Supplementary Figure S3 ) and publication bias ( Supplementary Figure S4 ).

Multi-regression analysis showed a higher leadership effectiveness in studies conducted in South America (β = 0.56 95%CI 0.13–0.99) in private hospitals (β = 0.60; 95%CI 0.14–1.06) and in the medical vs. surgical specialty (β = −0.22; 95%CI −0.54, −0.02) ( Table 2 ).

Multi-regression analysis of leadership effectiveness in cross-sectional studies.

* 0.05 ≤ p < 0.01.

4. Discussion

Leadership effectiveness in healthcare settings is a topic that is already treated in a quantitative matter, but only this systematic review and meta-analysis showed the pooled effectiveness of leadership intervention improving some healthcare outcomes such as performance and adherence to guidelines. However, the assessment of leadership effectiveness could be complicated because it depends on the study methodology and selected outcomes [ 12 ]. Health outcomes might benefit from leadership interventions, as Flodgren et al. was concerned about opinion leadership [ 2 ], whose adhesion to guidelines increased by 10.8% (95% CI: 3.5–14.6%). On the other hand, other outcomes did not improve after opinion leadership interventions [ 2 ]. Another review by Ford et al. about emergency wards reported a summary from the literature data which acknowledged an improvement in trauma care management through healthcare workers’ performance and adhesion to guidelines after effective leadership interventions [ 14 ]. Nevertheless, some variables such as collaboration among different healthcare professionals and patients’ healthcare needs might affect leadership intervention effectiveness [ 14 ]. Therefore, a defined leadership style might fail in a healthcare setting rather than in other settings [ 5 , 13 , 14 ].

The leadership effectiveness assessed through cross-sectional studies was higher in South America than in other continents. A possible explanation of this result could be the more frequent use of a transactional leadership style in this area, where the transactional leadership interventions were effective at optimizing economic resources and improving healthcare workers’ performance through cash rewards [ 48 ]. Financing methods for healthcare organizations might be different from one country to another, so the effectiveness of a leadership style can change. Reaching both economic targets and patients’ wellness could be considered a challenge for any leadership intervention [ 48 ], especially in poorer countries [ 5 ].

This meta-analysis showed a negative association between leadership effectiveness and studies by surgical wards. Other research has supported these results, which reported surgical ward performance worsened in any leadership context (charismatic, servant, transactional, transformational) [ 47 ]. In those workplaces, adopting a leadership style to improve surgical performance might be challenging because of nervous tension and little available time during surgical procedures [ 47 ]. On the other hand, a cross-sectional study declared that a surgical team’s performance in private surgical settings benefitted from charismatic leadership-style interventions [ 42 ]. This style of leadership intervention might be successful among a few healthcare workers [ 42 ], where creating relationships is easier [ 6 ]. Even a nursing team’s performance in trauma care increased after charismatic leadership-style interventions because of better communicative and supportive abilities than certain other professional categories [ 29 , 47 ]. However, nowadays there is no standardized leadership in healthcare basic courses [ 5 , 6 , 12 ]. Consequently, promoting leadership culture after undergraduate medical courses could achieve a proper increase in both leadership agreement and working wellness as well as a higher quality of care. [ 17 ]. Furthermore, for healthcare workers who have already worked in a healthcare setting, leadership improvement could consist of implementing basic knowledge on that topic. Consequently, they could reach a higher quality of care practice through working wellness [ 17 ] and overcoming the lack of previous leadership training [ 17 ].

Although very few studies have included in a meta-analysis examined in private healthcare settings [ 35 , 38 , 40 , 41 , 42 ], leadership interventions had more effectiveness in private hospitals than in public hospitals. This result could be related to the continent of origin, and indeed 60.0% of these studies were derived from North America [ 38 , 41 , 42 ], where patients’ outcomes and healthcare workers’ performance could influence available hospital budgets [ 38 , 40 , 41 , 42 ], especially in peripheral healthcare units [ 38 , 41 ]. Private hospitals paid more attention to the cost-effectiveness of any healthcare action and a positive balance of capital for healthcare settings might depend on the effectiveness of leadership interventions [ 40 , 41 , 42 ]. Furthermore, private healthcare assistance focused on nursing performance because of its impact on both a patients’ and an organizations’ outcomes. Therefore, healthcare systems’ quality could improve with effective leadership actions for a nursing team [ 40 ].

Other factors reported in the literature could affect leadership effectiveness, although they were not examined in this meta-analysis. For instance, professionals’ specialty and gender could have an effect on these results and shape leadership style choice and effectiveness [ 1 ]. Moreover, racial differences among members might influence healthcare system performance. Weech-Maldonado et al. found a higher compliance and self-improvement by black-race professionals than white ones after transactional leadership interventions [ 39 ].

Healthcare workers’ and patients’ outcomes depended on style of leadership interventions [ 1 ]. According to the results of this meta-analysis, interventions conducted by a transactional leadership style increased healthcare outcomes, though nevertheless their effectiveness was higher in the cross-sectional studies than in the before–after studies. Conversely, the improvement by a transformational leadership style was higher in before–after studies than in the cross-sectional studies. Both a charismatic and servant leadership style increased effectiveness more in the cross-sectional studies than in the before–after studies. This data shows that any setting required a specific leadership style for improving performance and guideline adherence by each team member who could understand the importance of their role and their tasks [ 1 ]. Some outcomes had a better improvement than others. Focusing on Savage et al.’s outcomes, a transformational leadership style improved checklist adherence [ 31 ]. The time of patients’ transport by Murphy et al. was reduced after conducting interventions based on a charismatic leadership style [ 37 ]. Jodar et al. showed that performances were elevated in units whose healthcare workers were subjected to transactional and transformational leadership-style interventions [ 1 ].

These meta-analysis results were slightly relevant because of the high heterogeneity among the studies, as confirmed by both funnel plots. This publication bias might be caused by unpublished articles due to either lacking data on leadership effectiveness, failing appropriate leadership strategies in the wrong settings or non-cooperating teams [ 12 ]. The association between leadership interventions and healthcare outcomes was slightly explored or gave no statistically significant results [ 12 ], although professionals’ performance and patients’ outcomes were closely related to the adopted leadership style, as reported by the latest literature sources [ 7 ]. Other aspects than effectiveness should be investigated for leadership. For example, the evaluation of the psychological effect of leadership should be explored using other databases.

The study design choice could affect the results about leadership effectiveness, making their detection and their statistical relevance tough [ 12 ]. Despite the strongest evidence of this study design [ 50 ], nowadays, trials about leadership effectiveness on healthcare outcomes are lacking and have to be improved [ 12 ]. Notwithstanding, this analysis gave the first results of leadership effectiveness from the available study designs.

Performance and adherence to guidelines were the main two outcomes examined in this meta-analysis because of their highest impact on patients, healthcare workers and hospital organizations. They included several other types of outcomes which were independent each other and gave different effectiveness results [ 12 ]. The lack of neither an official classification nor standardized guidelines explained the heterogeneity of these outcomes. To reach consistent results, they were classified into performance and guideline adherence by the description of each outcome in the related manuscripts [ 5 , 6 , 12 ].

Another important aspect is outcome assessment after leadership interventions, which might be fulfilled by several standardized indexes and other evaluation methods [ 40 , 41 ]. Therefore, leadership interventions should be investigated in further studies [ 5 ], converging on a univocal and official leadership definition and classification to obtain comparable results among countries [ 5 , 6 , 12 ].

5. Conclusions

This meta-analysis gave the first pooled data estimating leadership effectiveness in healthcare settings. However, some of them, e.g., surgery, required a dedicated approach to select the most worthwhile leadership style for refining healthcare worker performances and guideline adhesion. This can be implemented using a standardized leadership program for surgical settings.

Only cross-sectional studies gave significant results in leadership effectiveness. For this reason, leadership effectiveness needs to be supported and strengthened by other study designs, especially those with the highest evidence levels, such as trials. Finally, further research should be carried out to define guidelines on leadership style choice and establish shared healthcare policies worldwide.

Supplementary Materials

The following supporting information can be downloaded at: https://www.mdpi.com/article/10.3390/ijerph191710995/s1 , Figure S1. Leadership effectiveness by leadership style in before after studies; Figure S2. Funnel plot of before after studies; Figure S3. Leadership effectiveness in cross sectional studies by four leadership style; Figure S4. Funnel plot of cross-sectional studies; Table S1. Before after studies included in this systematic review and meta-analysis; Table S2. Cross-sectional studies included in this systematic review and meta-analysis. All outcomes were performance.

Funding Statement

This research received no external funding.

Author Contributions

Conceptualization, V.R., A.C. (Alessandra Casuccio), F.V. and C.F.; methodology, V.R., M.G., A.O. and C.T.; software, V.R.; validation, G.M., A.B., A.C. (Alberto Carli) and M.C.; formal analysis, V.R.; investigation, G.M., A.B., A.C. (Alberto Carli) and M.C.; resources, A.C. (Alessandra Casuccio); data curation, G.M. and V.R.; writing—original draft preparation, G.M.; writing—review and editing, A.C. (Alessandra Casuccio), F.V., C.F., M.G., A.O., C.T., A.B., A.C. (Alberto Carli) and M.C.; visualization, G.M.; supervision, V.R.; project administration, C.F.; funding acquisition, A.C. (Alessandra Casuccio), F.V. and C.F. All authors have read and agreed to the published version of the manuscript.

Institutional Review Board Statement

Ethical review and approval were waived for this study due to secondary data analysis for the systematic review and meta-anlysis.

Informed Consent Statement

Not applicable.

Data Availability Statement

Conflicts of interest.

The authors declare no conflict of interest.

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