Strengthening health literacy research through consumer engagement: a qualitative analysis of building and maintaining partnership.

Consumer engagement activities are variably implemented across research settings, and the 'science' of consumer engagement is still in its infancy. This study aimed to explore the experiences of community panel members who supported a university-based health literacy research group that delivers experimental and applied health research across a wide variety of health topics. An independent researcher interviewed participants, asking them to reflect on their understanding of health literacy research, their experiences on the panel, and strategies to improve the panel. De-identified transcripts were analysed using Framework analysis. Ten of the 13 Sydney Health Literacy Lab Co-SHeLL community panel members were interviewed (four men; seven born in Australia, six spoke English at home). We generated four themes from the data. The first three emphasized foundational elements that supported deeper consumer engagement: diversity and belonging, trust and respect, and effective structures. The fourth theme described how the panel provided mutual benefits to researchers and consumers through increasing skills and capacities, and that this improved the quality of the research. Participants described this as a gradual process that progressed over the course of the year. This rigorous qualitative evaluation identified values that may be important for long-term partnerships with consumers, particularly for health research groups with a broad remit (e.g. health communication and health promotion) that does not focus on a single health condition. Further research could evaluate this kind of consumer engagement activity over the longer term.