Towards Meaningful Consumer and Community Involvement in Health Research: A Qualitative Study of Consumer and Researcher Experiences.

backgroundConsumer and community involvement (CCI) in health research is recognised as an essential component of ethical, effective and relevant research practice. While the recommended principles that enable high-quality CCI are well established, consistent implementation remains a challenge.

objectiveTo inform consumer involvement strategies and practices, this study explored the experiences of researchers and consumers involved in CCI in research at a large metropolitan health service precinct in Brisbane, Australia.

methodsSemi-structured interviews were used to explore participants' experiences of CCI. Researchers and consumers who had undertaken CCI activities were purposively sampled from two hospitals and six research institutes. Thematic analysis using the framework method was employed to interpret the data. Coding was conducted both inductively and deductively, utilising a data-driven approach guided by the study's objectives.

resultsA total of 27 participants contributed (researchers, n = 17; consumers, n = 10). Five themes captured supportive and challenging elements of CCI and participants' visions for meaningful CCI in research. Themes included 'Laying the Groundwork', which reflects the foundational elements needed for meaningful partnering, and 'Navigating the Human Factor', which captures the interpersonal dynamics that shape CCI. 'Bridging Methods' described methodological approaches to CCI. Participants' challenging experiences with organisational structures and culture were represented by 'Opportunities: Organisational Barriers', while 'Paving the Way Forward' pointed to practical strategies for embedding CCI meaningfully and sustainably into research processes.

conclusionThis study shows that while CCI in health research is highly valued, it faces challenges like organisational barriers, administrative load and limited support. Meaningful CCI depends on early relationship building, role clarity, flexible processes and culturally safe, trauma-informed practices. To turn policy into action, research-active health services must streamline systems and create structures for long-term, inclusive involvement. Researcher training should cover CCI principles, as well as interpersonal and facilitation skills crucial for building successful and meaningful involvement partnerships. PATIENT OR PUBLIC CONTRIBUTION: This study benefited from the involvement of a health consumer partner (J.M.) throughout all stages of the research. Our consumer partner contributed to (1) drafting the initial grant proposal; (2) developing the research protocol, methods and processes; (3) research governance meetings; (4) the design and refinement of interview guides to ensure relevance and clarity of questions; (5) providing feedback in the form of sense checking developing themes to refine interpretation of findings; and (6) critically reviewing and providing feedback on manuscript drafts.