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Review
. 2025 Apr 29;11(1):38.
doi: 10.1186/s40900-025-00707-1.

Supporting consumer engagement in health research about chronic conditions: a scoping review of evidence-based resources

Mingming Zhou  1 , Anne Parkinson  2 , Mengyu Andy Lyu  3 , Hanna Suominen  4   5   6 , Leanne Watts  2 , Jane Desborough  7
Affiliations
Review

Supporting consumer engagement in health research about chronic conditions: a scoping review of evidence-based resources

Mingming Zhou et al. Res Involv Engagem. .

Abstract

Context and objective: 'Consumers' refers to individuals with lived experience of health issues, as well as their carers or family members, who are often referred to as patients or service users. The recognition of consumers' expertise through lived experience is increasingly acknowledged as essential in health research design. Involving consumers in research enhances relevance and fosters high-quality, consumer-centric outcomes. While previous reviews have examined resources that support consumer engagement in health research, this review aimed to identify evidence-based resources specifically designed for engaging consumers in research related to chronic conditions.

Design: We conducted a scoping review to map diverse resources, using the Arksey and O'Malley framework, enhanced by Levac et al. and the Joanna Briggs Institute.

Data collection: A search strategy was developed using keywords related to consumer engagement and supporting resources, such as models, frameworks, and tools. Seven databases were searched: PubMed, Web of Science, Cochrane, Scopus, EconLit, PsycINFO, and ACM Digital Library, targeting peer-reviewed articles published between 2013 and 2023.

Analysis: We conducted a qualitative thematic analysis by coding the results sections of each included study line by line. The codes were inductively grouped into descriptive categories, which were then synthesised into analytical themes and sub-themes.

Results: From 15,245 identified articles, 15 met the inclusion criteria. An overarching framework for consumer engagement in health research related to chronic conditions was synthesised, comprising six themes: 1. Promoting reciprocal learning, 2. Fostering a supportive environment, 3. Providing training to build capacity, 4. Acknowledging consumer contributions, 5. Using resources to facilitate engagement, and 6. Evaluating engagement impact.

Conclusion: This review integrates existing evidence-based resources for supporting consumer engagement in research about chronic conditions and presents an overarching framework. The findings offer valuable guidance for researchers aiming to effectively implement consumer engagement strategies tailored to individuals with chronic conditions.

Keywords: Chronic conditions; Consumer engagement; Health research; Scoping review; Thematic synthesis.

Plain language summary

Consumers, a broad term that includes individuals with lived experience of a health issue and their carers, are often referred to as patients or service users in health research. Involving consumers in health research helps make studies more relevant and produce better, more meaningful outcomes. This is especially important for research on chronic conditions, where consumer involvement can contribute to long-lasting results, given the ongoing impact these conditions have on daily life. This review aimed to identify evidence-based resources, such as frameworks and toolkits, specifically designed to support consumer engagement in research about chronic conditions.We searched seven databases and screened over 15,000 articles to find those that provided resources for involving consumers in research about chronic conditions. As a result of screening, we identified 15 relevant articles. From these, six key themes were identified: 1. Promoting reciprocal learning, 2. Fostering a supportive environment, 3. Providing training to build capacity, 4. Acknowledging consumer contributions, 5. Using resources to facilitate engagement, and 6. Evaluating engagement impact.We further synthesised the findings to develop an evidence-based framework to inform the approach to consumer engagement in research about chronic conditions. This framework offers validated guidance to support researchers and consumers in building effective and collaborative research partnerships in research about chronic conditions.

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Conflict of interest statement

Declarations. Ethical approval and consent to participate: Not applicable. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
PRISMA flowchart for study selection
Fig. 2
Fig. 2
Resource framework to support consumer engagement in research about people living with chronic conditions
See this image and copyright information in PMC

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