
==== Front
BMJ Open
BMJ Open
bmjopen
bmjopen
BMJ Open
2044-6055
BMJ Publishing Group BMA House, Tavistock Square, London, WC1H 9JR

39209491
10.1136/bmjopen-2024-086772
bmjopen-2024-086772
Protocol
Diabetes and Endocrinology
1843
1506
Patient, family and caregiver engagement in diabetes care: a scoping review protocol
http://orcid.org/0000-0001-7604-5158
Chamoun Dita 1Dita.Chamoun@unityhealth.to

http://orcid.org/0009-0000-3650-2668
Ramasamy Mathankki 2mathankki.ramasamy@unityhealth.to

http://orcid.org/0000-0002-5545-0610
Ziegler Carolyn 3Carolyn.Ziegler@unityhealth.to

http://orcid.org/0000-0002-2355-1046
Yu Catherine H 1catherine.yu@unityhealth.to

Wijeyesekera Pauline 4pbwijey@hotmail.com

http://orcid.org/0000-0003-0497-645X
Advani Andrew 10Andrew.Advani@UnityHealth.to

https://twitter.com/cherylpritlove
http://orcid.org/0000-0001-9627-7562
Pritlove Cheryl 250cheryl.pritlove@unityhealth.to

1 Keenan Research Centre for Biomedical Science and Li Ka Shing Knowledge Institute, Unity Health Toronto, Toronto, Ontario, Canada
2 Applied Health Research Center, Unity Health Toronto, Toronto, Ontario, Canada
3 Library Services, Unity Health Toronto, Toronto, Ontario, Canada
4 Patient Partner in Research, Toronto, Ontario, Canada
5 Social and Behavioural Health Sciences, University of Toronto, Toronto, Ontario, Canada
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

None declared.

Dr; cheryl.pritlove@unityhealth.to
AA and CP contributed equally.

2024
28 8 2024
14 8 e08677222 3 2024
13 8 2024
Copyright © Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
2024
https://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

Abstract

Introduction

New treatments and technologies have advanced diabetes care; however, diabetes continues to have a major impact on the daily lives of affected individuals, especially among equity-deserving groups. Evidence from patient engagement literature suggests that involving diverse patients in healthcare can create cost-effective improvements and enhanced efficiency in care that has high patient acceptability and numerous health benefits, as well as improved provider satisfaction. A scoping review will be conducted to provide a cohesive and comprehensive understanding of patient engagement practices and the resulting outcomes.

Methods and analysis

The review will follow the recommendations for the conduct of scoping reviews developed by the Joanna Briggs Institute (JBI) Scoping Review Methodology Group. The review will include English-language literature published between 1 January 1990 and the present, searched through MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCOhost), PsycINFO (Ovid), International Bibliography of the Social Sciences (IBSS), Sociological Abstracts, Applied Social Sciences Index and Abstracts (ASSIA), Scopus, Social Sciences Citation Index and Campbell Collaboration; hand searches; and grey literature. Literature that describes conceptualisations of engagement, methods/strategies for engagement and/or evaluations of engagement across different levels of diabetes care, including direct care, organisational design and governance and policymaking will be included. The review will encompass quantitative, qualitative and mixed-methods studies. Research that is secondary, published in languages other than English, or not specifically focused on patient engagement will be excluded. Screening and extraction will be completed by two independent reviewers and conflicts will be resolved by discussion or a third reviewer, with piloting at each step. Studies will be analysed through descriptive numerical summary and content analysis.

Ethics and dissemination

No ethical or safety considerations are pertinent to this work. The results will be disseminated to patients/patient advocacy groups, diabetes organisations, clinicians, researchers, decision-makers and policymakers by way of summary documents, infographics, meeting presentations and through peer-reviewed publications.

Trial registration number

The protocol has been registered with Open Science Framework: https://doi.org/10.17605/OSF.IO/KCD7Z.

patient participation
health equity
patient-centered care
general diabetes
http://dx.doi.org/10.13039/501100000226 Ontario Ministry of Health and Long-Term Care SMH-23-006 RDV Foundation NA http://dx.doi.org/10.13039/501100000029 Institute of Gender and Health PJT 178285
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pmcStrengths and limitations of this study

This scoping review protocol was designed by researchers, clinicians, an Information Specialist and a person with lived experience of diabetes—each of whom has experience and expertise in patient engagement.

The scoping review will adhere to current best practice guidelines developed by the Joanna Briggs Institute.

The review will be broad in its scope of coverage of patient engagement settings and its coverage of the international literature, both published and grey.

The search will be limited to English-language literature.

Introduction

In recent years, the lives of millions of people with diabetes have been improved by major therapeutic and technological breakthroughs. Medications with proven benefit in reducing the cardiovascular and kidney complications of diabetes have been adopted into guidelines and recommendations1 and devices for insulin administration and glucose monitoring have helped people with diabetes spend more of their time with glucose levels within a target range.2 Life expectancy has improved for people living with type 1 diabetes3 and type 2 diabetes,4 especially for those living in high-income jurisdictions.5 Despite these advances, however, diabetes continues to be a substantial burden both to individuals and populations. Diabetes self-management, for instance, involves time-demanding and highly skilled work, with patients often reporting management fatigue, burnout or diabetes-related distress.6 This, in turn, can lead to poor medication adherence,7 missed appointments with healthcare providers8 and inconsistent or absent tracking of glucose levels.8 Furthermore, the burden of diabetes falls disproportionately on people belonging to equity-deserving groups (eg, low socioeconomic status, racialised groups), who are at an increased risk for diabetes,9 and have decreased support or access to diabetes care10 and increased likelihood of negative health outcomes.11 A 2022 review found that some barriers to treatment adherence for patients with type 2 diabetes included financial and economic issues, poor communication with their healthcare team, lack of knowledge, misconceptions and poor health literacy.12 Further, culturally competent care plays a central role in disease self-management for racialised groups13 and has been proposed as a key focus to overcome health inequities14 15; yet, healthcare providers may face many barriers in acquiring the knowledge needed to provide culturally appropriate care.16 Thus, one can see how easily healthcare can become inequitable when it is designed to serve only a fraction of the population. Indeed, the recent COVID-19 pandemic exposed the many faults in the operations of our healthcare systems, including vastly inequitable access to healthcare.17 This has sparked calls for a change in the way healthcare is organised and delivered.18 19 As diabetes systems and services undergo a redesign, it will be important to involve those living with diabetes, their family and/or caregivers (hereafter collectively referred to as ‘patient(s)’) in decision-making to ensure that practices, services, programmes and policies are appropriate, accessible and, above all, equitably meet the needs of the populations they are designed to serve.

Patient engagement in health systems is recognised as a cornerstone of quality care.2027 With mounting evidence to support its promise, patient engagement has become a priority for most healthcare institutions.20 28 The place of patient engagement in improving patient safety has been emphasised by the WHO,29 and the potential benefits of engaging patients have been described across the life course.30 31 Through the lens of Carman et al.’s framework32—which categorises patient engagement into direct care (micro-level), organisational design and governance (meso-level) and policy-making (macro-level)—existing literature has placed the greatest emphasis on patient engagement in direct care.33 This focus is seen in healthcare in general, and diabetes care specifically,33 and includes efforts to improve patients’ capacity to manage their own care and participate in care-based decision-making.24 28 While implemented less frequently, there are also efforts to involve patients and families in broader ways, including organisational and service design, governance and policymaking.26 32 Models and frameworks of patient engagement have been developed to help guide engagement processes, including options for different approaches to engagement and patient roles (eg, consultant, advisor, co-designer/partner). A recent systematic review (not limited to people with diabetes) found that adopting high-level approaches, including co-design or partnership strategies with patients, reduced hospital admissions, improved care quality and health outcomes, produced more effective and efficient system operations, facilitated more cost-effective health service utilisation and improved patient and staff satisfaction.26 The review also noted patient concerns about tokenism and that lack of engagement may diminish the possibility of meaningful change.26 Furthermore, it is appreciated that populations experiencing discrimination or oppression are often under-represented in engagement strategies in direct care34 and health service planning and delivery.35 The extent of existing scholarship for the engagement of people with diabetes, a condition that is more prevalent in equity-deserving populations, however, is not known.

With its attendant daily self-management demands, chronic course and long-term risk of complications, diabetes is accompanied by an especially complex lived experience. Given the aforementioned benefits of patient engagement as a whole, it seems likely that representation of this complex experience in decision-making processes should improve healthcare system organisation, policy design and implementation, as well as individual care delivery.32 However, guidance on how to effectively and equitably engage diverse individuals living with diabetes in clinical care is currently lacking. To begin to address this knowledge gap, we will perform a scoping review to synthesise the evidence in this area.36 Scoping reviews are exploratory and particularly well suited to map the breadth of evidence on a given topic.37 While this means the analysis may lack depth on the topic, as mentioned, the focus of our review is on breadth—gathering as many examples of patient engagement activities as possible. This type of review will allow us to identify the extant literature on conceptualisations of engagement, methods/strategies for engagement (including barriers and facilitators) and/or evaluations of engagement (including outcomes); and gaps that may be filled as future research priorities. This protocol employs the term ‘patient engagement’ because of its common use in the literature. However, the scoping review will consider sources that use the language of patient (including family and/or caregiver) or user ‘engagement’, ‘participation’, ‘involvement’ or ‘partnership’, as these terms are often used synonymously in the literature.

Methods and analysis

Protocol and registration

This scoping review will follow the recommendations for the conduct of scoping reviews developed by the Joanna Briggs Institute (JBI) Scoping Review Methodology Group.36 Results will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews.38 The protocol for this scoping review was registered in the Open Science Frameworkhttps://doi.org/10.17605/OSF.IO/KCD7Z.

Research question

Primary question

How is patient engagement conceptualised, implemented and evaluated in diabetes care (direct care, organisational design and governance, and policymaking), and what are the outcomes?

Secondary question

How are equity, diversity and inclusion (EDI) considered in the context of patient engagement in diabetes care?

Eligibility criteria

Inclusion criteria

Participants

The review will consider literature that includes people living with diabetes (type 1 diabetes, type 2 diabetes, or gestational diabetes), of any age.

Concept

The review will consider literature that specifically identifies patient engagement in diabetes care as the primary focus and discusses conceptualisations of engagement, methods/strategies for engagement (including barriers and facilitators) and/or evaluations of engagement (including outcomes). The extent to which EDI is addressed within this literature will also be captured.

Context

The review will consider international literature that includes patient engagement in diabetes care.

Literature types

This review will consider any quantitative, qualitative or mixed methods primary literature. We will consider literature published from January 1990 to the present. We have chosen 1990 as the start date because this is considered the time that patient engagement gained popularity and research in the area increased.26 Grey literature will be considered and will include theses and dissertations, government reports, organisational reports and preprints. The language will be restricted to English.

Exclusion criteria

Due to resource limitations for full and accurate translation, articles written in a language other than English will be excluded; as will editorials, letters and reviews. Conference abstracts and posters will be excluded because they may provide insufficient detail for interpretation; however, the team will search for full-text articles when abstracts and posters appear relevant. Literature will also be excluded if: (1) it does not explicitly identify engagement as its primary focus; (2) it does not explicitly include patients or their families or caregivers; (3) the literature reports findings that exclusively focus on patient engagement in research (including intervention design for research purposes or involvement of patients solely as research participants) or health promotion.

Search strategy

The research team consists of a person with lived experience of diabetes, an Information Specialist, clinicians and researchers, who will co-create the scoping review to ensure that the focus incorporates end-user values. The search strategy will be designed and carried out by an Information Specialist (CZ) in consultation with the team. A second Information Specialist will peer review the search strategy using the Peer Review of Electronic Search Strategies checklist.39 A comprehensive search for literature published between 1 January 1990 and the present will be conducted using the following academic databases: All MEDLINE (Ovid), Embase (Ovid), The Cochrane Central Register of Controlled Clinical Trials (Ovid), CINAHL (EBSCOhost), PsycINFO (Ovid), International Bibliography of the Social Sciences (ProQuest), Sociological Abstracts (ProQuest), Applied Social Sciences Index and Abstracts (ProQuest), Scopus, Social Sciences Citation Index (by Web of Science) and The Campbell Collaboration. Grey literature searches will include ProQuest Digital Dissertations, and organisational reports. Organisational reports will be gathered from Diabetes Canada, Diabetes Action Canada, American Diabetes Association, International Diabetes Federation, European Association for the Study of Diabetes, Asia Diabetes Foundation, Latino Diabetes Association, Diabetes UK, Australian Diabetes Society, Diabetes Australia, International Society for Pediatric and Adolescent Diabetes, Diabetes Advocacy Alliance, and the WHO. In accordance with the JBI Manual for Evidence Synthesis,36 a three-step search strategy will be employed. The initial scoping will be done in two relevant online databases, MEDLINE and Embase. Text words contained in the titles and abstracts as well as the assigned subject headings of retrieved relevant papers will then be analysed and identified. The search strategies will be refined accordingly and adapted by each database. Grey literature searches will be guided by the Canadian Agency for Drugs and Technologies in Health (CADTH) Grey Matters checklist.40 See online supplemental file for the full search strategy and grey literature search strategy. The final step in searching will include a scan of reference lists of identified literature to hand search for any additional sources. The search strategy and search terms have been chosen to capture a wide range of articles that may discuss patient engagement using various terms (eg, patient involvement, patient partnership, patient participation). Keywords and subject headings were selected based on discussion among the team, a background search for definitions, alternate terms and the analysis of the language and subject headings used in key articles in the field of patient engagement.

Search terms/keywords to be used

Keyword searches will include

Diabetes

Patient/consumer/people with diabetes/diabetic/client/user/caregiver/multi-stakeholder/multi-knowledge user/PFAC.

Representation/engagement/involvement/activation/participation/empowerment/enablement/shared decision-making/co-design/co-create/co-develop/co-produce/EBCD/priority setting/advisor/partnership/consultation.

Data management

All data will be managed, including de-duplication, using Covidence software (Covidence, Veritas Health Innovation, Melbourne, Victoria, Australia).

Selection process

Screening forms will be developed according to the eligibility criteria and pilot-tested by the review team (DC, MR, CP) prior to text (titles/abstracts and full text) screening. The pilot test will include a random sample of 25 titles/abstracts to be screened by the team. The team will meet to make modifications to the eligibility criteria screening form for clarity. Screening will begin once sufficient (75% or greater) agreement among the review team has been achieved.41 Title and abstract screening will be completed independently by two members of the team (DC and MR) using AS Review (AS Review, V.1.3.2, Utrecht University, Utrecht, Netherlands).42 AS Review is an open-access machine learning software that reorders abstracts according to relevance.42 Each reviewer will train the algorithm with 10 random irrelevant and 10 relevant abstracts. A conservative stopping rule will be employed based on previous protocols,43 44 whereby abstract screening will continue until both reviewers have screened at least 50% of abstracts and 150 consecutive abstracts are marked as excluded. Included abstracts will be uploaded into Covidence for full-text review. Disagreements at title and abstract as well as full-text review will be resolved through discussion and, where necessary, a third member of the team (CP) will be asked to provide their view. The results of the search and selection process will be summarised using the PRISMA flow diagram.38

Data extraction

The research team will collectively develop the charting form to determine which variables to extract. These may include such things as study characteristics (eg, type of publication, study design, the main focus, methods, study population and sample size), geographical and care settings (eg, country/city/province; community health centre/hospital), level of engagement (direct care, organisation design and governance, policymaking),32 participant demographics (eg, age, gender, ethnicity, socioeconomic status) and study outcomes. Attention will be paid to the extent to which authors were sensitised to the importance of social identities. For example, some points that will be noted include whether authors made efforts to engage diverse participants; acknowledged that barriers and facilitators to engagement may look different for different identities and that engagement methods may need to differ according to an individual’s social location; efforts taken to foster inclusive engagement environments; or whether they acknowledged lack of diversity as a limitation to their engagement efforts.

Covidence software will also be used for data extraction and the charting form will be pilot-tested with a sample of five full-text articles and revised iteratively as articles undergo review. Full charting will be independently completed by two reviewers (DC and MR), with a third reviewer (CP) to resolve discrepancies.41

Quality assessment

In alignment with JBI guidance on scoping reviews36 quality assessments will not be conducted.

Data synthesis and presentation

The data extracted from the included studies will be analysed through a descriptive numerical summary and content analysis. Quantitative data will be synthesised using descriptive frequencies, tabulation and other visual representations of data, including infographics if appropriate. Qualitative data will be synthesised using descriptive qualitative content analysis which will begin with line-by-line coding of the text. Data reporting on social identity or social location will be summarised and cross-tabulated with outcome data to provide a more expansive view of factors that influence equity, diversity and inclusivity in patient engagement. Meta-analysis will not be performed. A discussion of implications and future directions will follow.

Patient and public involvement

An integrated knowledge translation approach is essential to this project that is predicated on the importance of patient engagement. Patient involvement in research, including knowledge synthesis, has been shown to increase relevance, appropriateness and quality.45 46 Patient involvement can also help identify themes surfacing from evidence as well as knowledge gaps—both critical components of data interpretation of reviews. The research team will, therefore, consist of a patient, clinicians and researchers, who will co-create the scoping review to ensure that the focus incorporates end-user values. Additionally, because later involvement of end-users sees reduced influence on study focus,45 involving patients and other end-users from the beginning is particularly important. The team has worked collaboratively to design the review and construct the protocol and will continue to meet regularly to allow input from everyone at critical stages throughout the review process, such as data synthesis and interpretation, manuscript development and creation of other forms of knowledge translation.

Ethics and dissemination

The scoping review will synthesise existing work and there are therefore no ethical or safety concerns. The target audience will be patients, patient advocacy groups, clinicians, healthcare organisation leaders, policymakers and researchers working in the diabetes and/or patient engagement space. Information dissemination will be by way of infographics and lay summaries, co-designed with a patient partner, for patient advocacy groups and through social media channels. Findings will also be presented at academic conferences and published in an open-access, peer-reviewed journal.

supplementary material

10.1136/bmjopen-2024-086772 online supplemental file 1

Review Process File
28 08 2024

Funding: This work was supported by the Ontario Ministry of Health and Long-Term Care Alternative Funding Plan Innovation Fund (Grant # SMH-23-006), The Canadian Institutes of Health Research (Grant # PJT 178285) and by the RDV Foundation (no Grant number). AA holds the Keenan Chair in Medicine at St. Michael’s Hospital and University of Toronto.

Prepub: Prepublication history and additional supplemental material for this paper are available online. To view these files, please visit the journal online (https://doi.org/10.1136/bmjopen-2024-086772).

Provenance and peer review: Not commissioned; externally peer reviewed.

Patient consent for publication: Not applicable.

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