25 June 2013. A workshop on Monday night, 22 April, at the 2013 ICOSR meeting featured the thoughts of a panel of researchers and lay people with schizophrenia on how to improve research on the disorder. Organized by Hakon Heimer, founding editor of Schizophrenia Research Forum and co-founder of Cure Alliance for Mental Illness, the “First Person” workshop’s working premise was that people with schizophrenia do not volunteer to participate in research as much as people with other disorders do, and that people with lived experience of the disease and psychiatric care might have insights about that disparity.
Several panelists added a second focus, challenging researchers to rethink what they think they know about schizophrenia by paying more attention to “phenomenology”—studying the experience of having schizophrenia as described by people with the disorder, with the twin goals of understanding the disorder better and informing the neuroscience (see, e.g., Owen and Harland, 2007). Overall, the ensuing discussion brainstormed ways to build a collaborative effort in which people with schizophrenia are seen as vital members of the research community, from participating in studies as subjects to designing and carrying them out as researchers.
For over two hours, the panel weighed in on many different topics, but returned time and again to the idea that researchers need to do more outreach to the community in order to gain the trust of people with schizophrenia. Nev Jones, a graduate student at DePaul University in Chicago, Illinois, kicked off the session with a review of potential reasons for low participation in research (and kindly shared her slides with us). One that particularly interested audience members was Jones' assertion that Robert Whitaker's 2002 book Mad in America and website of the same name remain influential among many people with mental illness and may even influence some parents of people with psychosis not to permit their children to be given antipsychotic medications. Jones noted that the psychiatric field never made significant public critiques of the book, leaving Whitaker's broad antipsychiatry message unchallenged in the lay public sphere.
She noted that gaining trust among potential study participants would provide a more diverse and representative population of people with the disorder, decrease anxiety among those who do participate, and improve understanding of the real-world impact of the research. However, Jones stressed that having people with schizophrenia participate in the direction and design of research could add further benefits. She mentioned the example of a phenomenology project she works on which recruited people with schizophrenia who could sufficiently articulate their psychotic experiences. This could help identify distinctions of the disorder that might be more relevant to the underlying neurobiology than the typical positive-negative cognitive symptom distinctions.
Clara Humpston, a graduate student at King’s College London, also emphasized the view that attention to phenomenology would be key to understanding the neurobiology behind the disorder, and referenced fMRI findings implicating certain brain regions in self-reference, which may be locations involved in the disturbed sense of self reported in schizophrenia. If people can understand that color-blind people perceive the world differently, she said, then why should psychosis be any different? “No one can deny my reality,” she said.
Robin Cunningham, co-founder of Cure Alliance for Mental Illness and a retired business executive, said that people with high-functioning forms of schizophrenia tend to keep their illness a secret, wary that disclosing it would threaten their careers or social circle. “There is a significant risk for high-functioning people with schizophrenia to participate in research,” he said. To mitigate this risk, he suggested focusing on issues surrounding informed consent and confidentiality, making it a priority to share research findings with participants, and infusing the experience of participating in a study with respect and unconditional acceptance. Although study leaders may understand this last point, he said, research assistants who interact with study participants on a day-to-day basis are not always properly trained.
Cunningham also emphasized that the current research interest in detecting schizophrenia in its earlier stages needs to be counterbalanced by research into how best to help people living out their lives with the disorder.
Stigma surrounding mental illness came up several times as a key barrier to research participation. Brandon Staglin, communications director of the International Mental Health Research Organization, offered that encouraging people with mental illness to tell their stories would go a long way toward reducing stigma. Staglin did this for the Bring Change 2 Mind series of videos, which strive to inform about mental illness and help people see how common it is. He emphasized that speaking out about the experience of mental illness encourages the public to view people with mental illnesses as individuals. As people without mental illness get to know someone with schizophrenia, it fosters understanding. “When you have a personal connection, that’s really powerful,” Staglin said.
Jones countered that addressing stigma within research groups and among clinicians was more important. Andrew Gadtke, author of Regular & Decaf, said that he had not experienced much stigma surrounding his own illness but offered that treatments to help keep people well would reduce people’s fears about schizophrenia. Staglin suggested that introducing mental health education in schools could also combat stigma by teaching the younger generation that mental illness is a biological process that can be treated.
When audience members asked for ideas about concrete ways of increasing and improving the experience of research participation, the panel gave several responses, ranging from conducting studies in drop-in centers rather than in laboratories, offering a social space to connect with other participants, and giving research updates to inform participants about the findings. In general, Jones emphasized that taking the questions and concerns of participants seriously signifies respect and would gain their trust. Cunningham concluded the session with an appeal to researchers and patients to work together. ”I think we just simply need to join forces,” he said.—Michele Solis.