A provocative paper says that neuroscientists who research mental health problems ought to listen to the views of people who have experienced those conditions. The piece, from Australian authors Anthony Stratford and colleagues, is published in The Psychiatric Quarterly.
Here are some highlights:
Traditionally, mental health consumer [i.e. patient] involvement in research activities has largely been as "subjects"... the passive recipients of research activity... This approach does little to engage consumers. [Community engagement] enables numerous benefits, especially in establishing the direction and utility of the research. The scientist has an opportunity to benefit from an up-to-date perspective on the everyday problems faced by people with the condition or disease they are investigating. Through dialogue, researchers could consider the challenges that people with mental ill health experience in their daily life; such as obtaining employment or organising finances, looking after their home or relationships. Neuroscience disciplines are highly technical in the language and experimental protocols that they employ, which can often make them difficult for members of the general community to understand.
All of this is sensible enough, but there's a major blind spot here. Stratford et al. talk as if scientists and patients (or 'consumers') are two distinct groups. But what about the people who fall into both categories? What about those neuroscience researchers who have experienced mental illness themselves? I am one of these people. I'm currently well, but I have a history of depression and I still take three different antidepressants. When I was in therapy, conversations with my therapist were a little awkward because she knew, professionally, some of the same people that I knew professionally. I'm not alone: I personally know of neuroscientists who are or were in treatment for depression, anorexia, social anxiety. So which side are we on? We have 'lived experience' of 'the challenges that people with mental ill health experience in their daily life' but on other hand we use the 'highly technical language of neuroscience'. However, Stratford et al. don't discuss people like me, perhaps because we don't fit into their us vs. them conceptualization of the issue. Stratford et al. portray psychiatric patients as the excluded underdogs, whose voice is being ignored. There's some truth to that, but it's paternalistic to assume that this is true of everyone. Also, I'm not sure that my 'lived experience' of mental illness does give me a special insight into it. I'm skeptical of the idea that experience of something automatically grants understanding of it. Experience provides knowledge but this is not the same thing. I think on balance that I have learned some things about depression from reflecting on my own illness but that doesn't qualify me to speak on behalf of other people with depression, let alone people with other problems.
Stratford A, Brophy L, Castle D, Harvey C, Robertson J, Corlett P, Davidson L, & Everall I (2015). Embedding a Recovery Orientation into Neuroscience Research: Involving People with a Lived Experience in Research Activity. The Psychiatric Quarterly PMID: 25969424