Involving consumers of mental health care services in research: Ethical issues, the IRB, and community-based participatory research

Community-based participatory research has been described as a partnership approach to research, in which community members and researchers are equitably involved in all phases of the research process, and where all partners contribute their expertise and share in decision making and ownership. As such, ethical issues often arise, particularly with regard to power dynamics and inclusion. Involving consumers of mental health services, a designated vulnerable population, in this type of research raises additional questions and challenges. Concerns about assessing competency, obtaining informed consent, and assessing capacity to give consent are compounded when consumers of mental health services are engaged as both researcher and subject.

This presentation will discuss the ethical dilemmas and challenges faced by the Boston Community Academic Mental Health Partnership (B-CAMHP), a community-based participatory research partnership designed to bring together consumers of mental health services, academic researchers, and other mental health community stakeholders. It will examine the IRB approval process for a pilot study of consumer perspectives on the frequent use of psychiatric emergency services; a study in which consumers of mental health services (or family members of such consumers)were hired and trained to conduct qualitative interviews with other mental health consumers who are frequent users of these services. The unexpected consequences, lessons learned, and changes to IRB policy that resulted from this process will also be explored.