Involvement in “Participatory Action Research” (PAR) has helped me become more directly involved in “community” outside of the medical center proper. That is, this kind of research is intended to directly involve those most affected by the research questions and findings (the “subjects”) in the conception, implementation, analysis and dissemination of the research findings. “Experts” in research (the principal investigators) and “experts” in subjective importance to the community (the “subjects”) come together in a joint effort that builds community and improves health/quality of life for all (including, interestingly, the PIs). This kind of approach is picking up some steam in World Health Organization and Public Health circles, and it potentially relates to recent calls for physicians to become more directly involved in community health beyond their offices or hospital doors.
In an initial study of factors that affect the quality of life of persons with mental illness, it was demonstrated that opportunities to engage in meaningful occupation with other members of the community had a major beneficial impact. Specially, participation in an inclusive community arts studio was shown to improve health and well being of persons who self-identified as having mental illness, as well as those who did not. Findings from the study have important implications regarding the pervasive and sometimes devastating impact of stigma in mental illness, identified by the U.S. Surgeon General as a major public health issue and barrier to recovery. Direct involvement of persons with mental illness in all aspects of this PAR project greatly enhanced the study design and implementation, and the findings have directly led to further community “action” and opportunities of this kind.
Participatory Action Research has the potential to enhance our understanding and management of a variety of important health issues, including subjective experience aspects of participating in human subject research itself. In connection with institutional review boards, for example, a study is being developed to examine the process of informed consent to participate in clinical research. Participants in select research studies within the medical center will be interviewed in depth to explore their understanding of their rights as research subjects, the limits of their knowledge about the studies they are enrolled in, and their “lived experience” as participants in clinical research. Actual study subjects will be involved in the design of this PAR project, analysis of the data, and in dissemination of the findings. It is expected that possible “actions” to be taken as a result of this research will include refinement of the informed consent process and greater awareness of subjective dimensions of participating in research of human subjects.
Funding has recently been requested to study physician factors regarding implementation of Evidence-Based Practice (EBP) guidelines in the diagnosis and treatment of Major Depression in both primary care as well as specialty settings. Previous work has demonstrated that among the many possible barriers to successful implementation of EBP, subjective physician factors may play an important role. Use of PAR principles, including up-front physician stakeholder involvement in study design and implementation, will help to enhance the validity of this study involving both quantitative as well as qualitative research methods.
Thomas Zelnik, M.D., Chair, Department of Psychiatry, and Clinical Investigator
Scholarly Activities - Psychiatry