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

Abstract

<p>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. <br></p><p>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. <br></p><p>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.</p>