Engaging consumers in health research: a narrative review

Objective Consumer and community engagement (CCE) in research is increasingly valued in a contemporary healthcare environment that seeks to genuinely partner with consumers and the wider community. Although there is widespread agreement at research governance levels as to the benefits of CCE in research, there is little available research-based guidance as to how best to proceed with CCE organisationally and how to manage and overcome barriers. The aim of this narrative review was to draw together the available research, review findings and relevant governance-related material and to discuss these in light of a case series among research-engaged consumers in order to chart a practical way forward. Methods A narrative literature review about CCE in research was conducted. Following this, a case series among seven consumers who had been engaged as partners in health research was conducted. Finally, the lived experience of these consumers was explored against the findings of the narrative review. Results In all, 121 papers were identified and reviewed, 37 of which were used to inform the content of this paper. The most important benefits of CCE to both consumers and healthcare researchers were related to improvements in trust between consumer and researchers, and the increased relevance and ethics of research agendas ultimately pursued. Barriers to CCE were found to be pragmatic, attitudinal and organisational. Enabling factors that capitalise on the benefits and help address the barriers to meaningful CCE are outlined and discussed in light of a case series conducted among research-engaged consumers in Australia and internationally. Conclusion Best practice standards, organisational commitments and resources are needed to improve the status quo in Australia and to provide health research end-users with research outcomes that better align with their priorities and needs. What is known about the topic? Consumer and community engagement (CCE) in research is increasing in prevalence and is likely to be beneficial to both consumers and healthcare providers and researchers. What does this paper add? Following review of the available research findings and governance statements about CCE, enabling strategies are presented in light of a case series among Sydney-based research-engaged consumers. What are the implications for practitioners? Barriers to consumer and community engagement can be overcome if well understood and tackled organisationally. The potential benefits of shifting to a fully consumer- or community-engaged healthcare research environment are multifactorial and represent a paradigm shift in favour of evidence-based patient and family-centred care.