Facilitating meaningful consumer and community engagement in research: co-designing plain language guides for applied...

In recognition of the contribution that consumers can make to research, the Australian National Health and Medical Research Council has called for the 'active involvement of consumers and community members in all aspects of health and medical research'. However, there are very few publicly available, easy-to-understand, co-designed resources that are targeted towards helping diverse consumers learn about specific research methods. The aim of this project was to co-design health literacy-informed, plain language guides for qualitative and (quantitative) survey research.

Multi-phase participatory co-design study.

This project was underpinned by consumer engagement principles (respect and equity; trust; empowerment) and followed the New South Wales Health's Agency for Clinical Innovation's four co-design steps (Engage; Gather; Understand; Improve). The co-design team comprised people with experience in qualitative and survey research, including members of the Sydney Health Literacy Lab's community panel. The project involved a series of online workshops to discuss each research method and learn from lived experience. Insights from the workshops informed drafts of the guides, which were iteratively revised with ongoing feedback. Health literacy resources, including the Health Literacy Editor (assessing grade reading score, complex language, and passive voice) and the Patient Education Materials Assessment Tool (assessing understandability and actionability), were then applied to assess each guide.

The two guides provide foundational knowledge about each research method, such as what research questions qualitative and survey research can answer, the types of data collected, and the types of analyses undertaken. Content provides clear examples of how consumers can be involved at each stage of the research process and best practice activities. The guides incorporate health literacy strategies where possible (Grade 9 reading level; 84% understandability and 83% actionability).

Through an iterative co-design process, we have developed research guides that seek to build consumers' capacity to engage more deeply in any given project, throughout the research process. They are positioned to support more equitable consumer engagement that better reflects the diversity of the communities we serve, including those with diverse health literacy needs.