Roles for Mental Health Consumers in Self-Help Group Research

Abstract

This article describes emerging roles of mental health consumers in self-help group research. Examples taken from recent empirical studies of self-help group activities among people with long-term and serious mental health disabilities illustrate new roles that transcend traditional relationships in research. A working typology for these roles include informed participant, key informant, advisor, staff member, and co-investigator as practical additions to the more traditional role of the research subject. Current guidelines for the protection of human subjects in research are limited in their ability to address ethical and procedural issues that arise out of these new role relationships. Self-help group research should address ethical issues that are not currently addressed by the established requirements of informed consent and IRB oversight. The author recommends that consumer review and approval be included as an integral part of the development and evaluation of human subject issues in clinical services research.