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Do we need more “Lived Experience” in Neuroscience?

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.

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Welcome to the Neuroscience Devils!

Welcome to the Neuroscience Devils (thanks to Neuroskeptic for that name)! This blog will contain anonymous guest posts by neuroscience and psychology researchers writing in the spirit of the now defunct Devil’s Neuroscientist. The idea is simple: posters may argue or rant against the prevailing views in the field concerning science policy, issues with the research community, or even specific scientific questions. Basically just about any topic is fine that challenges the general dogma or zeitgeist, such as “Why we should not share our data,” or “There is no replication crisis,” or “Bayesian inference is like a religion,” or “Big hype research area X everybody else does is complete nonsense.” You are especially welcome to express views you feel you can’t say publicly under your own name. It doesn’t matter if you agree or disagree with me (you wouldn’t know that anyway unless I tell you explicitly). Just be respectful and don’t slander.

The invitation to post is open to anyone although ideally they should be from the fields of neuroscience or psychology unless your post is very generally about scientific research. The style of your post, how long it is, how funny it tries to be etc, is all up to you. There are only a few very basic ground rules:

1. Don’t use profanity or name-calling, or really any kind of abusive language.

2. Don’t advocate truly immoral, deeply unethical, and/or outright illegal things.

3. Keep it general. This isn’t the venue for personal vendettas. Please keep it respectful and fair, even (or especially) if you are joking.

4. This blog won’t advocate pseudoscience. I won’t let this turn into an anti-vaxer or climate change denial platform (although the latter isn’t neuroscience anyway). If you want to “challenge dogma” on such topics, your post better come with some solid evidence!

If you have a post, or just the idea for one, please contact me, Sam Schwarzkopf, at the email below. I will copy and paste your post from the documents you email me. I created a specific email account for this blog, which I will never check from my office and thus the information never passes through my university’s network. I promise to keep any correspondence with me about this blog in the strictest confidence. However, if that still worries you, you can also go through an intermediary you trust and/or email me from an anonymous account.

One final thing: for now I decided to turn off comments. It feels to me that it would be too complex for me to host discussions of other people’s posts. I may change that in the future and if you really feel you want to allow discussion of your own post I can turn it on just for that on request.

Anyway, I hope to hear from many Devils! Please follow @NeuroDevils on Twitter to hear about new posts. Email your posts and inquiries to:

neurodevils -at- gmail -dot- com

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