A recent paper and a subsequent blogpost by Neuroskeptic brought the idea of mental health patients’ involvement in Neuroscience research to the fore of twitter debate. At many scientific meetings at conferences, this is a perennial issue that crops up: Should scientists be more worried about making patients an active part of the research process? Should patient consultations guide mental health research?
Neuroskeptic raises the very good point that there actually are many researchers who are mental health patients themselves – including himself. The simple fact of having depression, however, does not immediately convey a deeper understanding of the condition’s neuroscience.
And in fact, Neuroskeptic says (and I agree) that the idea that researchers need to include patients in the research process can seem paternalistic.
Yes – mental health problems make it harder to have an active voice in the research process. But individuals with, for example autism, (granted, not necessarily a “mental health problem” per se) are involved in autism research, and making incredible contributions to the field. Out of their own volition, without a “healthy” researcher going out and dragging them into the field.
However, I have some further issues with the cry for patient involvement in the research process.
For one, the whole idea presupposes a lack of empathy in the researchers that I don’t think is present. Of course, it is impossible to vicariously experience the physical symptoms of depression and its effects on mood without suffering from it. But in the course of an fMRI experiment, a neuroscientist will likely spend multiple hours with upwards of 20 individuals with depression. To say these interactions do not provide researchers with some degree of understanding of the issues concerning those individuals would be false.
In fact, one big issue with the idea of “experts by experience”, as the authors of the original paper put it, is that patients experience diseases remarkably differently. One of the most-repeated tropes about autism is that if you meet one person on the spectrum, you’ve met one person on the spectrum. Being one of those patients does not make that person an expert.
I also think it’s important to keep in mind the type of research that’s being conducted. Can individuals with psychosis contribute to research into the clinical treatment process of psychosis? Certainly, and this research already includes qualitative assessments of patient report.
Can individuals with psychosis contribute to research into the neurotransmitter behind psychosis? Not in a special way that scientists without psychosis can’t.
Fundamental research is often not immediately linked to treatment or improvements of quality of life for patients. Scientists usually have a good sense for what the research agenda should be, without special efforts to incorporate the “lived experience” of patients.
Ultimately, we all want patients and people who have recovered from mental health issues to succeed in life, and if they want they should be able to become neuroscientists. But one is not an expert in a disease without studying it in depth.