Meaningful engagement of lived experience in diabetes research and health service improvement: A rapid review of barriers to and enablers for community involvement among adults with type 2 diabetes

Abstract

Background

Consumer and community involvement (CCI) is increasingly recognised as critical to advancing equity, relevance and impact in diabetes research and health service improvement. However, the meaningful and representative involvement of people with diabetes, particularly those with type 2 diabetes (T2D) and from diverse communities, remains limited.

Aim and Method

This article provides an overview of the emerging CCI literature in the context of diabetes, including a rapid review identifying barriers to and enablers of CCI in research and health services for people with T2D.

Results

Key barriers included negative past experiences of CCI, lack of tailored CCI approaches and experiences of diabetes stigma. Enablers of involving those with T2D include building professional–community partnerships and facilitating genuine contribution and collaboration through safe and inclusive environments, valuing community expertise and co‐sharing of power and ownership of projects. While such strategies were drawn from studies involving culturally, ethnically and linguistically diverse populations, the literature is largely limited to high‐income countries. Practical and conceptual directions to advance CCI in diabetes research and health services are considered, including the need for co‐design of context‐ and community‐specific approaches of CCI, routine evaluation of (community‐relevant) impacts of CCI and resourcing facilitators and systems to engage meaningfully in CCI.

Conclusion

These findings suggest key considerations to support more inclusive, representative and impactful involvement of people with diabetes and identify the need for further research to tailor CCI strategies to the diverse communities they aim to serve.

What's new?

• Consumer and community involvement (CCI) is a core component of research and health service improvement and is vital to ensuring that the psychosocial needs of people with diabetes are addressed; however, meaningful and representative involvement remains limited.

• Building respectful partnerships, safe and inclusive environments and commitment to co‐ownership are critical enablers. Diabetes stigma, competing demands and lack of tailored CCI approaches were notable barriers.

• There is a clear need for further understanding of how to tailor CCI for diverse diabetes communities and support routinely embedded CCI in diabetes research and health service improvement.

1. INTRODUCTION

Meaningful involvement of people with lived experience of diabetes in research and health service initiatives is essential for meeting the needs, priorities and preferences of those most affected and achieving real‐world impact. ¹ While different terminology is applied internationally (‘patient and public involvement’, ‘consumer and community engagement’ and ‘patient engagement’ are often used interchangeably ² ), the core principle remains the same: research and health service initiatives should be carried out ‘with’ or ‘by’ lived experience and other community members (including caregivers), rather than ‘to’, ‘about’ or ‘on’ them. ³ In Australia, the term consumer and community involvement (CCI) is utilised across health and medical research. ⁴ CCI reflects diabetes‐specific language guidance to avoid the term ‘patient’ (but not ‘consumer’) ⁵ and acknowledges the active contribution the community can make to research and health service initiatives (i.e., involvement). ¹ For consistency, we use the term CCI throughout; however we do not apply the term ‘consumer’ directly to people with lived experiences of diabetes, in line with community preferences. ⁵ Box 1 provides definitions of key terms.

BOX 1. Definitions of key terms.

The following definitions are used for the purpose of this review:

• Research is defined as the creation of new knowledge and/or the use of existing knowledge in a new and creative way to generate new concepts, methodologies, inventions and understandings. This could include synthesis and/or secondary analysis of previous research to the extent that it generates findings that are new and creative. ⁶

• Health services is defined as all the services provided to protect and improve health, delay or reduce the risk of illness and/or disability, as well as medical, nursing, allied health and social rehabilitation services. ⁷

• Consumer and community involvement (CCI) is defined as people with lived experience actively collaborating with or leading researchers or organisations to shape decisions made, so that such decisions are made with or by communities rather than about them or for them. ³ Alternative terms used throughout the broader literature include patient and public involvement (PPI), consumer and community engagement, patient–researcher engagement, patient engagement. ²

This review, conducted by a multidisciplinary team including people with lived experience of diabetes (with representation of type 2 diabetes [T2D], type 1 diabetes [T1D] and gestational diabetes [GDM] and professionals with expertise in research, clinical care, healthcare delivery and/or advocacy), summarises the emerging literature on CCI, its relevance to diabetes research and healthcare and highlights current gaps in CCI adoption in diabetes. We present findings of a rapid review that explores barriers to, and enablers of CCI, specifically in people living with T2D. The International Diabetes Federation reports that more than 90% of all people with diabetes have T2D, ⁸ yet there is a lack of CCI representation amongst this cohort and challenges reported in engaging T2D communities in co‐design of programs and in research and health services improvement more broadly. Well‐documented self‐ and social stigma experienced by people with T2D has substantial psychological impacts which may limit engagement in CCI. ⁹ , ¹⁰ , ¹¹ While there is a focus on T2D communities, considerations and future directions to support improved CCI of people with all types of diabetes are discussed. CCI is reported in accordance with the Guidance for Reporting Involvement of Patients and the Public 2 short form (GRIPP2‐SF) checklist. ¹²

2. THE MOMENTUM OF CCI

There is growing recognition of the value and benefits of CCI, ¹³ , ¹⁴ , ¹⁵ alongside increasing expectation that it is meaningfully integrated into research and health services. In several countries, health and medical regulatory ¹⁶ and research funding bodies ¹⁷ require demonstration of meaningful CCI. For example, a recent surge of CCI activity in clinical trials in the UK is attributed to the National Institute for Health Research requirements of active CCI in research it funds. ¹⁸ , ¹⁹ CCI can increase recruitment, diverse representation and retention rates in research/health service initiatives, ²⁰ , ²¹ and promote efficient use of finite health and research resources. ² , ³ , ¹³ , ²² For community, benefits of CCI also include individual knowledge gain, empowerment and enhancing the quality, relevance, impact and dissemination of research findings. ²³ When incorporated in clinical trials or quasi‐experimental interventions, CCI is associated with improved mental health outcomes. ²⁴ However, despite the development of statements, guidelines and resources to guide CCI activities, ³ , ¹⁵ , ²⁵ CCI often remains ‘ad hoc’. ³ , ⁴ Further evidence is required as to what constitutes best practice, skills and training as well as how CCI should be measured and evaluated across diverse settings and populations. ² , ³ , ¹⁵ , ²⁶ Several challenges to CCI have been identified. From community perspectives, these include tokenistic involvement, inadequate time allowance and communication and lack of role clarity. ²⁷ Researchers' perspectives include balancing various inputs, managing relationships, allocating time and resources and (lack of) appropriate training. ²³ , ²⁷

2.1. Growing role of CCI in diabetes

In the context of diabetes, CCI is gaining momentum with emerging literature offering practical case examples and learnings of CCI, ²⁸ , ²⁹ , ³⁰ evaluation of the impact of CCI on health outcomes, ³¹ , ³² and documentation of its application, most typically in T1D research, quality improvement and clinical care. ³³ , ³⁴ , ³⁵ However, there remains limited understanding of how best to support people with diabetes to participate in CCI, particularly those from underrepresented groups. A key recommendation from Diabetes UK's 2022 workshop to address health inequalities in diabetes is the need to understand ways to improve CCI to make diabetes research more inclusive of, and relevant to, diverse communities. ³⁶ Failure to involve diverse community perspectives limits the broad relevance and application of research findings, including the effectiveness and uptake of health innovations within various sub‐groups of the community. ³⁷

3. SPOTLIGHT: BARRIERS AND ENABLERS OF CCI FOR PEOPLE WITH T2D

Reviewing lived experience perspectives on involvement in diabetes research and healthcare initiatives is vital to improving CCI practice. Given reported underrepresentation, we undertook a rapid review to identify barriers to and enablers of CCI in research and health services improvement among adults living with T2D.

3.1. Methods

A rapid review protocol was registered with Prospero (ID CRD42024552102) and findings are reported in accordance with PRISMA 2020 ³⁸ and GRIPP2‐SF checklist. ¹²

3.1.1. Positionality statement

We acknowledge that our identities (including our lived, loved, learned and laboured experiences) shape our research approach. Our multidisciplinary authorship team brings expertise across research, healthcare, advocacy and/or lived and living experience. All authors have experience of facilitating and/or participating in diabetes community involvement activities for research and/or health service improvement in an Australian context, and several authors have experience facilitating diabetes community involvement in an international research context. Among us, three members of the team live with type 2 diabetes (EPL; TF; RK), including one member diagnosed at a younger age and from a culturally and linguistically diverse background who also cares for family members living with type 2 diabetes. All contributed as community advisory members. The lead (JJ) and senior author (EH‐T) engaged in regular discussions with community advisory members to check that findings are presented and contextualised in a way that reflects real‐world experiences. Two authors have lived experience of other forms of diabetes (type 1 diabetes, MR; gestational diabetes, EH‐T), while several authors have family members with lived or living experience of diabetes. It should be noted that these authors’ primary involvement in this study was as professionals in community engagement and research. The authorship represents men and women across diverse ages and career stages. We recognise that our relatively limited and privileged position (i.e., living in high‐income countries; predominantly White) may influence our interpretations and framing of results, and what we perceive as cultural and social ‘norms’ will differ from those perceived by individuals from other backgrounds and populations (e.g., marginalised communities; young‐onset type 2 diabetes).

3.1.2. Lived experience community advisory group (CAG)

The involvement of a T2D CAG across all project stages helped to shape results that reflect ‘real‐world’ experiences and to inform acceptable recommendations. CAG members responded to an open call or direct email (known contacts who had participated in a related study ³⁹ ). The CAG included two men and one woman from two Australian states, living in rural, regional and metropolitan areas, aged from young adult to older age.

Three online group meetings, ad hoc individual meetings and email correspondence were facilitated by JJ and EHT. CAG members received AUD$50 gift voucher per meeting to recognise time and contribution. In the first meeting, CAG members were invited to share their experiences and views on CI, review the research protocol and discuss how they would like to be involved. To support this discussion and shared understanding, an article on CCI was circulated beforehand. ² CAG members expressed a strong desire to have access to and be involved in the review of identified articles. During subsequent individual meetings we discussed: (1) how our CCI practice could be improved, resulting in additional online meeting support, and (2) how to support members in providing feedback on selected articles, resulting in a collaboratively designed set of questions (see Data Extraction). In subsequent meetings, CAG members collaborated on developing themes and interpreting the findings through group discussions. All CAG members contributed meaningfully as co‐authors (EPL, RK, TF).

3.1.3. Eligibility criteria for review

Included articles were primary or secondary studies, published in English in peer‐review journals, that explored or reported on barriers/enablers of T2D CCI. For empirical studies, eligible samples included individuals with T2D, family members/carers of people with T2D, as well as the workforce (e.g. health professionals, researchers, community and health organisations). No publication date restriction was set. Studies that focused on people or communities without T2D (including those ‘at risk’ but not living with T2D) were excluded. See Supplemental file 2–4 for full criteria.

3.1.4. Information sources and search strategy

A search of peer‐reviewed literature was undertaken in July 2024 and updated in June 2025 across CINAHL Complete, EMBASE, APA Psych Info, Medline and Web of Science databases. Select medical subject headings (MeSH) search terms and synonyms related to T2D and CCI were used to identify relevant articles (Supplemental File 1). Search results were imported into EndNote and then Covidence for duplicate deletion and screening. ⁴⁰

3.1.5. Selection process

Title and abstract screening were undertaken by JJ or EHT, with the first 20 articles double screened to check for consistency. Full text screening was conducted independently by two reviewers per article (JJ, EHT, RG, EL), with conflicts discussed and resolved via team discussion. See Figure 1 for PRISMA flow diagram and reasons for exclusion.

FIGURE 1.

PRISMA flow diagram.

3.1.6. Data extraction and narrative synthesis

Data extraction (JJ) collated article characteristics and relevant results into Excel. Characteristics included: setting, methods, participant groups (including diversity focus) and approach to CCI. Extracted results were barriers to, and enablers for, CCI (including qualitatively derived themes, illustrative quotes). EHT, RG and EL independently reviewed the extracted results for a subset of 16 articles to validate this process, and EPL, RK and TF (CAG) independently reviewed six articles (of their choosing) to provide lived experience perspectives. When reading through the articles, CAG members were prompted to consider (i) what does this study mean to me? (ii) what can be learned from this study to improve T2D CCI? and (iii) was there anything missing? Reflexivity was encouraged throughout data extraction, with written reflections on the reviewed articles (captured in Excel) informing the synthesis and interpretation of results. NVivo (version 14) ⁴¹ was used to inductively code specific barriers and enablers, led by JJ with input from co‐authors. An iteratively refined framework was applied, with categories reviewed and overarching key themes identified. Salient CAG insights (derived from audio‐recorded meetings, with consent) are presented below as illustrative quotes to amplify lived experience voices.

4. RESULTS

Of 8798 unique articles (excluding 4401 duplicates), 48 were included in the review (Figure 1). Articles were published between 1997 and 2025 with 23% (n = 11) published in the last year (July 2024–June 2025). ³ , ³⁹ , ⁴² , ⁴³ , ⁴⁴ , ⁴⁵ , ⁴⁶ , ⁴⁷ , ⁴⁸ , ⁴⁹ , ⁵⁰ Table 1 summarises article characteristics.

TABLE 1.

Study characteristics.

References	Country	T2D subgroup focus	Study type; study design	Stakeholder groups represented				CCI approach
				People with T2D	Family/carer	HCPs	Other
Adili 2012 51	Australia	Older women, newly diagnosed with T2D	Primary; qualitative	X				PAR
Akbar 2021 52	Australia	Australian Pacific Islander Women	Primary; qualitative	X	X	X	X	CBPR, Talanoa approach
Akbar 2022 53	Australia	Australian Pacific Islanders Women	Primary; qualitative	X	X	X	X	CBPR, Talanoa approach
Akbar 2023 54	Australia	Māori; Australian Pacific Islander	Primary; qualitative	X	X	X	X	CBPR, Talanoa approach
Allen 2019 55	USA	Hispanic/Latino American	Primary; qualitative	X			X	CBPR
Berge 2009 56	USA	American Indian	Primary; qualitative	X	X	X	X	CBPR
Blanchfield 2022 57	Ireland	Lived experience of chronic kidney disease	Primary; mixed methods	X		X		PAR
Boston 1997 58	Canada	Aboriginal people of Canada	Primary; qualitative	X	X	X	X	PAR
Campbell, DJT. 2021 59	Canada	Lived experience of homelessness	Primary; qualitative	X				CBPR
Campbell, RB. 2021 60	Canada	Lived experience of homelessness	Primary; qualitative	X				CBPR
Catapan 2024 50	Australia	N/A	Primary; qualitative	X		X	X	Participatory Design
Chen 2011 61	USA	Latino	Primary; case study	X	X	X	X	Community‐led
Crumby 2018 62	USA	N/A	Primary; qualitative	X		X	X	CBPR
Fawcett 2013 63	USA	Latino	Primary; qualitative	X		X	X	CBPR
Golembiewski,2024 49	USA	N/A	Primary; mixed methods	X		X	X	Multistakeholder advisory group
Greenwood 2019 64	USA	Hispanic	Primary; qualitative	X	X	X	X	CBPR
Harris 2019 31	N/A	N/A	Secondary; realist review	N/A	N/A	N/A	N/A	NR
Hawkins 2025 45	USA	Black men	Primary; randomised controlled trial	X	X	X	X	Community partnerships
Haynes 2018 65	USA	N/A	Primary; qualitative	X	X	X	X	Advisory group
Hicks 2024 48	N/A	Women of reproductive age accessing pre‐pregnancy care	Secondary; systematic review	N/A	N/A	N/A	N/A	NR
Hildebrand 2018 66	USA	Latino	Primary; qualitative	X		X		NR
Jordan 2025 39	Australia	Rural communities	Primary; qualitative	X				NR
Kovanur Sampath 2025 44	N/A	Indigenous communities	Secondary; scoping review	N/A	N/A	N/A	N/A	NR
Lemmens 2015 67	Netherlands	N/A	Primary; qualitative	X		X	X	NR
Lindenmeyer 2007 68	UK	N/A	Primary; qualitative				X	Advisory group
McElfish 2017 69	USA	Marshallese Pacific Islanders	Primary; qualitative	X	X	X	X	CBPR
Mendenhall 2003 70	USA	N/A	Primary; qualitative	X	X	X		CBPR
Mikkelson 2025 43	Denmark	Living with schizophrenia	Primary; qualitative	X		X	X	Participatory design
Mitchell 2020 71	UK	Guyanese women	Primary; qualitative	X				Participatory inquiry approach
Ng 2024 29		N/A	Secondary; commentary	N/A	N/A	N/A	N/A	Community‐led
Pullen‐Smith 2008 72	USA	Racial and ethnic minority populations	Primary; qualitative			X	X	Advisory group / consultations
Purnell 2016 73	USA		Primary; qualitative	X		X	X	CBPR
Purvis 2021 74	USA	Marshallese Pacific Islanders	Primary; qualitative			X	X	CBPR
Ramos 2013 75	USA	African American and Latino	Primary; qualitative				X	CBPR
Sadler 2011 76		Ethnic minorities	Secondary; case studies	N/A	N/A	N/A	N/A	NR
Schmittdiel 2015 77	USA	N/A	Primary; mixed methods	X		X	X	Advisory group / consultations
Smith 2024 47	USA	Older adults	Primary; qualitative	X				NR
Spruill 2010 78	USA	African American	Primary; qualitative	X	X	X	X	Citizen Advisory Committee (informed by CBPR)
Taggart 2024 46		People with an intellectual disability	Secondary; lecture	N/A	N/A	N/A	N/A	NR
Tariq 2023 79	Canada	Lived experience of homelessness	Primary; qualitative	X				CBPR
Tay 2021 80	Australia	N/A	Primary; qualitative	X		X		Co‐design participatory approach
Tichler 2025 42	Netherlands	N/A	Primary; qualitative	X		X	X	Advisory group
Wang‐Letzkus 2012 81	USA	Older Chinese Americans	Primary; qualitative	X				CBPR
Webster 2017 82	Australia	Aboriginal peoples	Primary; qualitative	X		X	X	PAR
Williams 2009 83	USA	People with visual impairment	Primary; qualitative	X			X	PAR
Yankeelov 2019 84	USA	Older adults in rural communities	Primary; qualitative	X	X	X	X	PAR
Young 2021 85	USA	N/A	Primary; qualitative	X		X		Advisory group
Zimmerman 2017 86	USA	N/A	Primary; qualitative	X		X	X	Stakeholder Engagement Methodology

Note: Country is not reported for secondary studies. Participant groups represented relate to data collection and/or community involvement processes. Other stakeholders include: researchers, community leaders or elders, organisational leaders, technical or content experts. CI approaches vary in labelling, conceptualisation and application between studies.

Abbreviations: CBPR, community‐based participatory research; HCPs, healthcare professionals; N/A, not applicable; NR, none reported; PAR, participatory action research; UK, United Kingdom; USA, United States of America.

Most articles were primary studies (n = 42; 87%), conducted in seven high‐income countries, most commonly in the USA (n = 24, 56%). Nearly all employed qualitative or mixed‐methods approaches (n = 40, 97%), and included CCI with, and/or participation of people living with T2D (n = 38, 90%). Only three explicitly aimed to identify barriers/enablers of CCI for people with T2D. ⁶⁶ , ⁶⁷ , ⁸¹ Six secondary studies were identified, including three reviews (scoping, ⁴⁴ realist ³¹ and systematic ⁴⁸ ), a commentary, ²⁹ a case study ⁷⁶ and published lecture. ⁴⁶ Of these, one focused on T2D communities ⁴⁴ while others considered CCI across diabetes types (including T2D). Most studies (n = 33; 69%) focused on a specific T2D subgroup, typically CALD and/or Indigenous communities. ⁴⁵ , ⁵² , ⁵³ , ⁵⁴ , ⁵⁵ , ⁵⁶ , ⁵⁸ , ⁶¹ , ⁶³ , ⁶⁴ , ⁶⁶ , ⁶⁹ , ⁷¹ , ⁷² , ⁷⁴ , ⁷⁵ , ⁷⁸ , ⁸¹ , ⁸² , ⁸⁶ Some studies focused on T2D communities made vulnerable through insecure housing, ⁵⁹ , ⁶⁰ , ⁷⁹ older age, ⁴⁷ , ⁸¹ low socio‐economic circumstances, ⁶² living in rural areas ³⁹ , ⁶² , ⁸⁴ or living with co‐morbidities. ⁴³ , ⁵⁷ , ⁸³

Embedded CCI (beyond data collection/participation) was identified in most studies (n = 40, 83%). The most common approaches were community‐based participatory research (CBPR) and participatory action research (PAR). CBPR involves equitable collaboration among community members, researchers, health professionals and/or other stakeholders, emphasising adaptation to local contexts.  ⁸⁷ PAR engages those affected (e.g. people with T2D) as co‐researchers in iterative cycles of observing/planning, acting and reflecting, continuing until participants perceive meaningful development. ⁵⁰ , ⁵⁷

Across articles, there was greater focus on enablers of T2D CCI than barriers. Evidence of enablers (no barriers) was extracted from 11 articles, and both barriers and enablers were extracted from 37 articles. Findings were synthesised into six barriers and six enablers (Figure 2) and described below.

FIGURE 2.

Identified barriers to and enablers of consumer and community involvement in research and health services improvement for people living with T2D.

4.1. Barriers to CCI among people with T2D

4.1.1. Prior experiences of inauthentic involvement

Prior experiences of inauthentic involvement with research or the healthcare system led to mistrust and/or reluctance to become involved. ⁵⁵ , ⁸⁰ Negative experiences included tokenistic collaboration, ²⁹ , ⁷⁵ without shared ownership, including around the release of data and study outcomes; ⁵⁷ , ⁷⁵ devaluing lived experience expertise (e.g., through a lack of appropriate recognition for their contribution – including a lack of monetary compensation); ²⁹ , ⁵⁹ , ⁶² , ⁷⁵ not feeling heard or having the opportunity to discuss their experiences ³¹ , ⁵⁵ , ⁸² and; feeling let down by the health system in the management of their diabetes. ⁸² A perceived lack of understanding by researchers or health professionals of the time, flexibility and resourcing required to accommodate a process to build respectful and trusted relationships was also identified. ⁵⁵ , ⁵⁶ , ⁶⁶ , ⁷⁶ , ⁷⁷ Further, failure to share research findings with communities also promoted a perception that there were no benefits from research. ⁷⁵

CAG lived experience insights: ‘The disregard for our lived experience by the medical profession is something I have experienced frequently and believe is a major barrier to involvement in research.’

Mistrust or scepticism of research and/or the broader health system was exacerbated by historical cultural or racial discrimination. Historical events such as colonisation and dislocation of Indigenous people, ⁸² experiences of racism or discrimination based on culture ⁴⁴ , ⁷¹ , ⁸² or past trauma through isolation and racial segregation ⁶⁹ , ⁷⁸ were identified as barriers (and impetus for) CCI in diverse T2D communities.

4.1.2. Diabetes stigma and avoiding public disclosure of diabetes

Cultural beliefs and practices that are shared socially among members of a particular community (e.g. Chinese, Latino Americans, Pacific Islander and Indigenous communities) affect individuals' willingness to disclose their condition to others, including taking part in research. ⁵⁸ , ⁶⁶ , ⁶⁹ , ⁷¹ , ⁸¹ Diabetes stigma was apparent, where negative perceptions or social shame of the condition often included not only to the person living with T2D but also extended to their families in sharing a diagnosis, ⁸⁵ feeling unable to participate in collectivist practices ⁶⁹ or openly discussing their condition. ⁵⁸ , ⁶⁴ , ⁷¹ , ⁸¹

CAG lived experience insights: ‘Stigma and shame on family, blaming the individual's behaviours and then also the parents for “passing on” diabetes to children or not looking after them properly.’

Experiencing stigma as part of diabetes care from the behaviours, attitudes and perceptions of health professionals was also a barrier to CCI. ⁴⁸ Another barrier was experiencing stigma in relation to more than one condition e.g., diabetes stigma and mental health stigma or stigma associated with homelessness, which affected self‐esteem and further discouraged CCI. ⁴³

4.1.3. Competing demands: Socio‐economic and health constraints

Socio‐economic and health constraints were commonly identified as preventing individuals' involvement, for example, family or work commitments, including the need to travel and in some cases by offshore for periods of time. ⁴⁹ , ⁶⁰ , ⁶² , ⁶³ , ⁶⁶ , ⁷⁸ , ⁷⁹ , ⁸³ Acute health episodes or living with more than one chronic condition also impacted individuals' ability to become involved. ⁵⁹ , ⁸²

4.1.4. A lack of community‐tailored approaches to support involvement

Communities faced diverse challenges in accessing research or health service improvement initiatives, and often community‐tailored approaches were lacking. This included the need to consider suitable transport for those living in rural or isolated areas, ⁶² , ⁸⁴ signage requirements for people with impaired vision, ⁸³ and privacy considerations for people with insecure housing. ⁵⁹ , ⁶⁰ For communities made vulnerable by factors such as insecure housing, the absence of appropriate supports from researchers—such as trauma‐based care or support for triggering issues as part of the research ⁶⁰ —reduced individuals' willingness to interact in group situations. Similarly, individuals with vision impairment reported missing information from a presentation because presenters did not always verbalise what was on the slides ⁸³ and English language barriers experienced by CALD communities could cause individuals to be reluctant to verbalise their concerns. ⁸¹

CAG lived experience insights: ‘If we want to include diverse perspectives, we need to cater for them such as having translators/interpreters.’

Further, not tailoring information to the needs of community members, including cultural relevance and finding a ‘common language’ limited their ability to provide comprehensive feedback and engage effectively with the study. ⁴⁵ , ⁴⁶ , ⁴⁹

CAG lived experience insights: ‘It was quite striking how different the approaches were and how necessary these different approaches are. What I perceive as the “Western” idea of doing research does not necessarily work with under‐represented groups or minority communities.’

4.1.5. Unequal opportunities for community involvement

Two articles ²⁹ , ⁶⁵ highlighted ‘over‐servicing’ of select community representatives, where there is a preference to involve those who have previously participated in research. This resulted in individuals feeling overwhelmed and in some cases, experiencing burnout, and excluded other community groups that lacked similar opportunities to have their voices heard. ²⁹ , ⁶⁵

CAG lived experience insights: ‘Rural communities are stretched, people who are able to contribute are doing so much already and they are all tired. They are putting in so much because they care.’

4.1.6. Technology barriers

For older adults, lack of confidence or familiarity with technology, including email and online platforms, may result in them missing or disregarding information sent through this modality, ⁴⁷ while others may be challenged using online communication platforms, ⁴⁵ , ⁷⁹ or understanding technical support protocols. ⁸⁵ Additionally no/limited internet access can also be a barrier to involvement, ⁴⁵ , ⁷⁹ particularly for those living in rural areas. ³⁹

4.2. Enablers of CCI for people with T2D

4.2.1. Promoting professional‐community partnerships

Building relationships with community was a key enabler identified in 34 included articles. Various elements were identified to promote these partnerships including the importance of taking the time to build trusted relationships, ³¹ , ⁴² , ⁵³ , ⁵⁵ , ⁵⁷ , ⁵⁹ , ⁶⁸ , ⁶⁹ , ⁷² , ⁷⁶ , ⁷⁸ , ⁷⁹ , ⁸⁵ notably sharing personal stories and experiences to build rapport between community and researchers, ⁵³ , ⁵⁵ , ⁷¹ , ⁸¹ , ⁸⁵ engaging with the broader community through attending major events, cultural celebrations or meetings outside of the research/health service project. ⁴⁵ , ⁵⁵ , ⁵⁶ , ⁶³ , ⁷⁴ , ⁷⁶ Connecting with community leaders or individuals who have long‐standing personal connections or networks and influence within the local community was also important. ³⁹ , ⁵⁵ , ⁶² , ⁷³ , ⁷⁴ , ⁸¹

4.2.2. Setting clear expectations and goals

In establishing partnerships between researchers/health professionals and communities, outlining clear expectations and goals from each contributor, ⁴² be it in the form of a living ‘terms of reference’, ⁵³ , ⁷⁹ setting collective goals and monitoring progress, ⁴² or revisiting roles on a regular basis ⁶⁵ , ⁷⁹ , ⁸³ , ⁸⁵ were important processes to facilitate collaboration. ⁸¹

4.2.3. Placing emphasis on community benefits

To encourage CCI, it was important to promote the benefits of research/health service initiatives to individuals with T2D and the broader community. This included providing diabetes education or support services (including peers support) alongside the primary CCI initiative. ⁵¹ , ⁵⁵ , ⁵⁹ , ⁶² , ⁷⁸ This served as an incentive for community members to remain engaged and strengthened relationships because researchers/health professionals were seen to be responding to and investing in the needs of community. ⁴⁸ , ⁵⁵ , ⁵⁹ , ⁷¹ Additionally, promoting CCI as an opportunity to amplify communities' voices and/or take action on an important health issue (i.e., T2D) in the community was an enabler. ³⁹ , ⁴⁸ , ⁵⁹ , ⁶⁴ , ⁷¹ , ⁷⁸ , ⁸⁴

CAG lived experience insights: ‘It should be a mutually beneficial relationship so it's good to have something that community can look forward to and also build their knowledge and skills in.’

4.2.4. Facilitating genuine contribution and collaboration with community

Genuine CCI requires (i) a safe and inclusive environment (ii) valuing community expertise and (ii) sharing power and fostering co‐ownership.

Several elements were identified as contributing to creating a safe and inclusive environment. This included the involvement of a conduit who can bridge research/healthcare and community worlds through their lived experience and training and play an important role in supporting collaboration. ⁵⁵ , ⁶³ , ⁷⁸ , ⁷⁹ , ⁸² Inclusive communication was supported by involving bilingual researchers or interpreters, ⁵³ , ⁵⁵ , ⁶⁴ , ⁶⁶ , ⁸¹ providing translated materials, ⁶¹ , ⁶³ , ⁶⁹ , ⁷⁰ , ⁷⁴ and creating appropriate cultural spaces for communication ⁴⁴ e.g., use of Talanoa or yarning circles for Indigenous people. ⁵³ , ⁵⁴ Respect for cultural protocols (e.g., gender roles, engagement with Elders) was essential, ⁶⁹ , ⁸¹ as was researchers’ modelling culturally respectful behaviour. ⁵³ , ⁵⁵ , ⁷⁶ , ⁷⁸ , ⁸¹ , ⁸⁶ Meeting in familiar or neutral spaces which were easily accessible, ³² , ⁴³ , ⁵¹ , ⁵³ , ⁵⁵ , ⁶² , ⁷⁹ safeguarding privacy (e.g., not recording meetings) ⁵⁰ or using personas ⁴³ were also enablers for creating safe spaces.

Valuing community expertise was demonstrated through meaningful recognition, including fair remuneration for community time and input, ²⁹ , ⁴⁹ , ⁸⁵ prioritising lived experience in discussions ⁸⁵ and demonstrating willingness to listen, trust and give up some power in relation to decision‐making. ⁶⁸ , ⁶⁹ , ⁷⁷ , ⁸² Autonomy was supported by enabling communities to: define their role, ⁴⁵ set meeting agendas and research questions, ⁵³ , ⁵⁵ , ⁵⁶ , ⁷¹ lead discussions or facilitate sessions for researchers to hear community experiences, ⁶⁵ , ⁸³ and chair meetings. ⁶⁸ , ⁷⁷ Flexible engagement methods (e.g. in‐person or digital formats, varied scheduling) accommodated diverse needs ⁴⁸ , ⁵³ , ⁵⁵ , ⁵⁹ , ⁶² , ⁶⁶ , ⁶⁸ , ⁶⁹ , ⁷⁵ , ⁷⁶ , ⁷⁷ , ⁷⁸ , ⁷⁹ and addressed barriers relating to transportation, mobility, socio‐economic and health constraints. ⁴⁷

Power‐sharing strategies included involving multiple community members as part of a project team, ⁷⁷ , ⁷⁹ , ⁸⁰ balancing the number of community members with other stakeholders in group meetings, holding separate meetings for community members or peer researchers ⁶² and addressing individuals using first names. ⁴⁹ Involving community members as co‐researchers/project members, ⁴² , ⁴⁵ , ⁵³ , ⁵⁹ , ⁶⁹ , ⁷⁴ , ⁸¹ and seeking input throughout the entire process were also identified as enablers of meaningful CCI. ⁵⁸ , ⁶⁹ , ⁷³ Such input helped identify priority research questions and priorities, ⁶³ shape budgets, guide intervention development and support implementation and dissemination (including sharing community‐friendly data). ⁷⁶

4.2.5. Providing support and training

Providing relevant education, support and training enabled community members to understand and contribute meaningfully to an initiative. This included training to understand different research processes, ⁵⁵ , ⁵⁹ , ⁷⁴ , ⁷⁵ education in community‐centred research, ⁷³ aspects of diabetes care ⁶⁷ , ⁷⁹ and orientation to project elements, such as teleconferencing. ⁷⁹ Co‐learning approaches were also described, where both community members and researchers build capacity together. ⁵⁵ , ⁶³ , ⁷¹ , ⁷⁶ , ⁸³ Support mechanisms included offering a nominated contact person for debriefing, ²⁹ , ⁴⁹ , ⁷⁹ including caregivers to assist with cognitive challenges, visual or hearing impairments or support with technology ⁴⁶ , ⁴⁷ or having access to online support groups or providing social networking opportunities with other community members. ⁴⁸

4.2.6. Communication is key

Frequent communication between researchers/health professionals and communities underpins all listed enablers to increase T2D CCI. Early and frequent collaboration throughout the research process allowed for community input to be incorporated at relevant stages and fostered reciprocal respect and equitable partnerships. ³¹ , ⁵⁶ , ⁸⁵ Regular communication (e.g., email updates, newsletter) was also noted to maintain interest and support of community members and increase commitment to complete projects ⁶⁵ , ⁸¹ and allowed community members to remain up‐to‐date on progress between meetings. ⁴⁹

CAG lived experience insights: ‘Communication is key. If the people you want to be involved in research don't understand what you are wanting, then they can't get involved.’

Tailoring information that uses lay language which is empowering and positive for community members as well as ensuring accessibility such as providing real‐world examples to illustrate concepts was also important. ⁴⁸ , ⁴⁹ , ⁶² , ⁶⁹ Co‐created information also ensured cultural appropriateness, respect for local practices and increased feasibility and acceptability of advice. ³¹

5. INTERPRETATION OF RAPID REVIEW FINDINGS

This review highlights the critical importance of building respectful and trustworthy partnerships with T2D communities through frequent communication, safe and inclusive environments and demonstrating genuine commitment to ‘co‐ownership’ to support meaningful CCI. The identified barriers and enablers to CCI largely align with those described in the World Health Organization (WHO) Framework for Meaningful Engagement ¹ and other relevant frameworks. ¹⁶ In particular, dignity and respect, elimination of stigmatisation, capacity building and redistribution of power are recognised universally as essential for the meaningful involvement of people with lived experience in research or health services. Failure to implement these elements into practice for T2D communities may inhibit meaningful CCI, particularly for those with prior experiences of inauthentic involvement and for communities affected by historical, cultural or racial discrimination. While CCI activities in the identified articles were often focused on engaging CALD communities within T2D contexts, there was little discussion of diabetes‐specific engagement barriers. This reveals a notable gap in research on translating these principles into CCI practices tailored specifically to T2D populations. As effective CCI mechanisms may differ across diabetes types and demographic groups, tailored strategies are needed to ensure meaningful and equitable engagement for T2D communities. ⁴ , ⁶⁴ , ⁸⁸

Diabetes stigma and its intersection with other forms of stigma ⁴³ , ⁴⁸ , ⁶⁰ , ⁷⁹ was identified as a major barrier to CCI regardless of age, geographical location and modes of involvement (e.g., online or in‐person), particularly in interactions with health professionals and desire to avoid public disclosure of diabetes. ³⁹ , ⁶⁴ , ⁸¹ , ⁸⁵ Although recognition of the prevalence and harmful impacts of diabetes stigma across diabetes types, ¹⁰ , ⁸⁹ , ⁹⁰ , ⁹¹ , ⁹² internalised stigma (i.e., self‐stigma) remains most prominent among people with T2D and shapes their willingness to engage in CCI through perceptions of safety and trust. ⁸⁹ Greenwood et al. ⁶⁴ reported that a predominantly T1D‐led online community noted the absence of people with T2D and identified stigma as a likely barrier. Our lived experience authors echoed this, reflecting on their own experiences of diabetes stigma, and how this influenced their engagement in diabetes research and peer‐led spaces. The recent international consensus statement calling for an end to diabetes stigma highlighted the influence researchers and health professionals have in either perpetuating or mitigating diabetes stigma and the need to ensure stigma‐free practices and communications. ⁸⁹

People with T2D, especially those from marginalised communities, may hesitate to engage due to past negative or tokenistic experiences of CCI, lack of genuine ownership and limited trust in research or health services. ²⁹ , ⁷⁵ When benefits of involvement were unclear or outcomes not shared, engagement was further discouraged. ⁷⁵ Conversely, clear and tangible benefits – access to diabetes education, peer support or opportunities to amplify community voices – were important enablers for sustained CCI. ⁵⁵ , ⁵⁹ , ⁷¹ , ⁷⁸ Such practices can help rebuild trust and demonstrate responsiveness to T2D community priorities, provided benefits genuinely align with community needs. While published community priority‐setting activities ⁹³ , ⁹⁴ and unmet healthcare needs, ⁹⁵ offer guidance, it is imperative to ask specific T2D communities involved what they value and expect from CCI, especially for groups that are typically underrepresented in research and, potentially, decision‐making spaces. Notably, this review did not identify any relevant articles from low‐to‐middle income countries, despite reported high prevalence of T2D, ⁸ suggesting there may be other cultural and/or sociological factors that shape CCI practice. This may also be a consequence of limiting the search to English only publications. Our lived experience co‐researchers also identified gaps in representation from LGBQTI+ communities, young adults with early onset of T2D and people living with disability(ies) or multiple long‐term conditions. ²⁹ , ⁹⁶ , ⁹⁷

To our knowledge, this is the first review to focus on barriers to and enablers of CCI specifically among T2D communities. While this review did not appraise the level or depth of CCI described in each study, it is notable that many articles offered little detail about when and how communities were engaged and rarely focused specifically on T2D‐related considerations. As a result, many studies overlooked critical elements of genuine co‐ownership, such as how decisions were shared and how diabetes stigma was addressed. Further, there was limited evidence reported on the effectiveness of enablers to increase CCI in T2D communities. With increasing activity of CCI in research and health service improvement, there is a clear need for a stronger focus on evaluating the effects and impacts of CCI. ⁹⁸

A key strength of this review was its grounding in real‐world perspectives, guided by our lived experience co‐researchers. Listening to their personal experiences enabled us to interpret the findings in a more personal and grounded lens. Further, CAG members actively ‘called out’ research jargon, simplified language and made findings practical and accessible. We also gained important insights for our own CCI practice, including the need to assess and support technological access and skills, and to discuss preferred titles (e.g. co‐researcher), varied roles and types of contributions and meeting logistics (e.g., timing, format, duration and remuneration). Taking a more informal approach to meetings and focusing on sharing experiences and perspectives facilitated more fruitful and impactful discussions and outputs for the project. The professional research authors recognised a tension between wanting to avoid overburdening the CAG co‐researchers while remaining open to their guidance on preferred level of involvement. This balance was achieved through transparent discussions about available resources to support CCI, research timelines, minimum expectations and ongoing invitations for the CAG to guide and shape their involvement.

6. CONSIDERATIONS FOR IMPROVING DIABETES CCI

Box 2. summarises the enablers of CCI identified in our review. These are broadly aligned with findings across diabetes types (e.g., in T1D, ³³ in GDM ⁹² ) and with established CCI principles/frameworks. ³ , ²³ , ⁹⁹ Specifically, key principles include: dignity and respect, recognition of expertise, flexible involvement (e.g. people with GDM may face competing demands during pregnancy and post‐birth), eliminating diabetes stigma, capacity building and redistribution of power. These principles support individuals' capability to access and engage in CCI opportunities, which are tailored to community‐specific motivations. While many enablers are consistent across diabetes communities, experiences of diabetes, including manifestations and impacts of diabetes stigma and exclusion, management, technology access, age and lifestage, as well as other cultural and sociological factors can differ by diabetes types. Thus, it remains important to identify and implement CCI mechanisms that are responsive to community‐specific needs.

BOX 2. Key considerations for authentic CCI in diabetes research and health service improvement.

Fostering strong professional‐community partnerships:

• Exploration and understanding of the local context, building presence in the community and sharing experiences.

• Identification of key local champions, organisations and community networks.

• Establishing ongoing dialogue with communities about CCI.

Setting clear expectations and roles within collaborative partnerships:

• Clear purpose on what needs to be accomplished in what timeframe.

• Community input and co‐ownership of expectations and goals.

• Transparent and flexible processes to establish community partnerships and optimise diverse representation.

Prioritising community benefits:

• Identify community perceptions to inform the outputs of research.

• Position CCI as an avenue for collective voice and action.

Ensuring genuine contribution and collaboration with the community:

• Creating safe, inclusive spaces.

• Recognise and remunerate lived experience expertise.

• Offer flexible processes and pathways to CCI.

• Ongoing commitment to co‐learning, co‐sharing and co‐ownership.

Training and support:

• Empowering community members to nominate how and what they want to upskill in.

• Providing appropriate support mechanisms, including emotional and financial support.

Clear and continuous communication:

• Use of accessible, empowering language.

• Co‐creation of appropriate materials that cater to the needs of communities.

While there is general agreement for a need to demonstrate the difference CCI makes to research and health service improvement, ¹⁰⁰ approaches to ‘how’ and ‘what’ should be measured and reported remains debated. ²⁰ , ⁹⁸ , ¹⁰⁰ CCI processes and impact are typically retrospectively and anecdotally reported, with limited methodological rigour. ²⁰ , ⁹⁸ Measuring the impact of CCI or establishing causal associations or improvements in health outcomes, quality of care or service change is inherently challenging due to the dynamic and highly variable goals, approaches and outcomes of CCI. ²⁰ , ⁹⁸ , ¹⁰¹ These are dependent on the purpose of a project, how community is involved, activities undertaken and the extent to which CCI is genuinely incorporated. ²⁰ , ¹⁰¹ Understanding the context and specific mechanisms of CCI activity is critical. ²⁰ To maintain growth of CCI in diabetes, establishing more ‘robust’ evidence to convince potential naysayers of its value and importance is needed. Greater consensus on the range of impacts of CCI on people, services or systems and research, based on ‘grounded’ theoretical or conceptual frameworks, as well as the development of a range of metrics which assess a variety of outcomes in different contexts, will advance the evaluation of CCI impact. ²⁰ , ²⁶ , ⁹⁸ , ¹⁰² While it is acknowledged that a number of measurement/evaluation tools for CCI exist, these tend to focus more on context and process indicators than outcomes. ¹⁰⁰ , ¹⁰¹

The enablers in this review focus on supporting the involvement of people with diabetes in research and service improvement, not researcher or system‐level factors. To accelerate widespread adoption and evaluation of CCI in the diabetes sector, broader commitment and interdisciplinary collaborative leadership at a system level will be critical. ¹⁰³ This includes commitments from organisations (research, healthcare, government, diabetes advocacy and publishing bodies) to provide the required infrastructure and mechanisms that appropriately resource and support authentic CCI, including education and skills training, promoting cultural shifts in procedures (e.g., human resources, payroll) and regulations to facilitate greater diversity in CCI. ¹⁰² , ¹⁰³

7. CONCLUSION

CCI in research and health service improvement is essential to ensure the emotional, social and behavioural challenges experienced by people living with diabetes are recognised and their needs and priorities addressed. Despite increasing momentum, there remains a need to understand how to tailor CCI strategies and processes for various diabetes communities to increase diversity of representation. Learning what diabetes communities want from CCI and how they perceive success is critical for developing appropriate tools and measures to assess CCI impact. Critically, this further work must be undertaken with and by the community, ensuring their perspectives and expertise shape future research and care improvements.

FUNDING INFORMATION

This study was supported by the Australia Centre for Accelerating Diabetes Innovations (ACADI; established through Medical Research Future Fund funding via the Australian Government's Targeted Translation Research Accelerator Programme, delivered by MTPConnect) and the Australian Centre for Behavioural Research in Diabetes (ACBRD; funding derived from a collaboration between Diabetes Victoria and Deakin University).

CONFLICT OF INTEREST STATEMENT

The authors have no conflicts of interest to report.

Supporting information

Data S1: