Patient Advocacy and Engagement in Clinical Research

Ethical questions relating to the work of patient advocates in clinical research have been given insufficient attention. What experience and training must a person have to participate in patient engagement in clinical research? What does it mean for an advocate to be representative, and to what extent are advocates expected to represent the full range of perspectives of patients with the condition or that may be impacted by the proposed research? Are there conflicts of interest (financial and otherwise) that affect patient engagement in clinical research, and if so, how can they be managed?

Deliverables