The roles and responsibilities of patient partners in the development of research ethics guidelines
Thursday, October 12, 2023
9:45 AM – 11:00 AM ET
Location: Galena (Fourth Floor)
Incorporating diverse patient voices in the design, conduct, and dissemination of health research is generally viewed as an asset. Indeed, research funders increasingly recommend or require patient and public involvement in research. Patient and public involvement refers to the inclusion of patients and other relevant stakeholders as equitable and active partners in research—distinct from being research participants—with the goal of improving the relevance, impact, and uptake of research results.
However, it is unclear what the roles and responsibilities of patients are when it comes to the development of ethics guidelines governing the conduct of health research involving human participants. While recent discussion amongst bioethicists highlights concerns about the value of lived experience in normative debates (American Journal of Bioethics 2023; 23(1): 12-49), we argue that patient partners provide important practical insights that are essential to the development of ethics guidelines.
In this talk, we discuss our methods of engaging patient partners throughout our project to co-develop ethics guidelines for cluster randomized trials conducted in the hemodialysis setting. We will describe our process for identifying and soliciting the perspectives of patient partners and share our evolving thoughts on the roles and responsibilities of patient partners in the development of research ethics guidelines. We conclude by offering critical reflections on our process so others can learn from our experience.
Stuart Nicholls – Senior Clinical Research Associate & Strategy for Patient Oriented Research (SPOR) Facilitator, Clinical Epidemiology Program & Office for Patient Engagement in Research Activities (OPERA), Ottawa Hospital Research Institute