Dr Bridget Pratt1
1Australian Catholic University, Australia
Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This study provides initial evidence about what they think are important ways to share power when setting health research projects’ topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions. These findings were subsequently incorporated into the development of an ethical toolkit for designing priority-setting processes that meaningfully include communities. The toolkit is a reflective project planning aid. It consists of 4 worksheets (Worksheet 1- Selecting Partners; Worksheet 2- Deciding to Partner; Worksheet 3- Deciding to Engage with the Wider Community; Worksheet 4- Designing Priority-setting) and a
Companion Document detailing how to use them. Reflecting on and discussing the questions in
Worksheets 1 to 4 before priority-setting will help deliver priority-setting processes that share power with communities and projects with research topics and questions that more accurately reflect their healthcare and system needs.
Bridget Pratt is a senior lecturer at the Queensland Bioethics Centre at Australian Catholic University. Her research interests include the ethics of global health research and health systems research, with a focus on social and global justice.