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Community engagement-mental health research
Applying community engagement to mental health research can help researchers design studies that incorporate the priorities of people with mental illness and arrive at the best strategies for working with them. However, review boards can hinder this type of research by seeing the population as too vulnerable to fully participate and by requiring "paternalizing" protections not just for participants, but for peer evaluators who assist in the study, says a researcher who has specialized in community-engaged mental health research for more than 20 years.
"[Review boards] may over-reach on protection of vulnerable populations that want to participate in research," says Jean Campbell, PhD, a research associate professor with the Missouri Institute of Mental Health in St. Louis. "They assume [peer evaluators] are part of the patient population, as opposed to the research population."
The push for community engagement in research in general has intensified in recent years, out of a sense of respect to the communities being studied, but also because it can help strengthen studies and aid in recruitment, says James DuBois, PhD, DSc, director of the Center for Research Ethics and Integrity at the Albert Gnaegi Center for Healthcare Ethics at St. Louis University.1
DuBois, who specializes in mental health research ethics, says that as he speaks with mental health consumers, he is struck by how their priorities about research differ from those of investigators. For example, he says research tends to focus on efficacy of drugs, with less attention given to side effects that can be so disturbing to patients that they discontinue taking the medications.
In the area of mental health research ethics, DuBois says, the vast majority of studies funded by the National Institutes of Health (NIH) focus on decision-making capacity. "I think it's good research, I think it's an important topic," he says. "Studies clearly show that you can have a diagnosis of bipolar disorder or schizophrenia and frequently retain decision-making capacity. So in one sense, you could say it's de-stigmatizing. But I know some mental health consumers who say that the very fact that this is the topic they keep studying is stigmatizing, because it reinforces the idea that they don't have decisional capacity."
Treating evaluators as vulnerable
DuBois says that while review boards are most concerned with decisional capacity and undue influence, mental health consumers tend focus more on a study's benefits, whether payment for participation fairly compensates subjects, and whether subjects face the possibility of being randomized to placebo or being asked to undergo a washout period.
Because of these differences, it's important to include people with mental illness at the earliest stages of research projects, DuBois says. But building in this type of involvement can raise challenges that don't come into play when dealing with other communities. Because of concerns about confidentiality, it might be as difficult to recruit mental health consumers to join an advisory board or to act as a peer evaluator as it is to recruit subjects.
Campbell says she sometimes must deal with gatekeepers just to put up posters in a community mental health center looking for workers. "I'd have to go through case managers who would try to evaluate whether people were well enough to do this work." And review boards might put extra restrictions on how they can participate on the research team. "There is some assumption that the peer evaluators aren't going to maintain confidentiality as well, even if we show them the training that they're given," Campbell says. Review boards worry that participating might "endanger their mental health — the peer evaluators' mental health," she says. "These things aren't true, but they are the type of things that a [review board] would question."
As one example, Campbell says, a research project that wants to post pictures of its staff, including peer evaluators, on a web site might prompt concerns that the confidentiality of the peer evaluators is being breached, even if the evaluators give permission for the use of the photos. "[The review board is] concerned that you're violating their confidentiality as a patient, which doesn't make sense," she says.