A2 Refereed review article in a scientific journal

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




AuthorsZhou, Mingming; Parkinson, Anne; Lyu, Mengyu Andy; Suominen, Hanna; Watts, Leanne; Desborough, Jane

PublisherSpringer Science and Business Media LLC

Publication year2025

JournalResearch involvement and engagement

Journal name in sourceResearch Involvement and Engagement

Article number38

Volume11

eISSN2056-7529

DOIhttps://doi.org/10.1186/s40900-025-00707-1

Web address https://doi.org/10.1186/s40900-025-00707-1

Self-archived copy’s web addresshttps://research.utu.fi/converis/portal/detail/Publication/498442331


Abstract

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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Funding information in the publication
This project was funded by the Australian Research Council, Discovery Early Career Researcher Award #DE220100663, The Real Price of Health: Experiences of Out-of-Pocket Costs in Australia.


Last updated on 2025-13-06 at 12:27