What Can “Lived Experience” Teach Neuroscientists?

By Neuroskeptic | May 20, 2015 7:06 am

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.

bluemanHere 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.

ResearchBlogging.orgStratford 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

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  • Emily Baltz

    One other thing to note is people with mental health conditions that make it to academia or industry often have access to support and treatment that may be different from other people with the condition. Also, until we have representative distribution of women, African Americans, Latin@s, and other historically underrepresented groups in science, the lived experience of a disease or disorder is going to be skewed towards the dominant perspective.
    I think it still may be good to get direction from the community when conducting research.

    • http://blogs.discovermagazine.com/neuroskeptic/ Neuroskeptic

      I agree – there is no single monolithic experience of “mental illness” (or even of “depression”). Different people experience it differently.

      This is why I don’t find the dualism of ‘consumers’ vs. researchers helpful.

      So yes, some views are underrepresented when academics think about mental illness. But I don’t think it’s useful to make a blanket statement that consumer or patient views aren’t being heard. The problem is more complex than that.

      • http://blogs.discovermagazine.com/neuroskeptic/ Neuroskeptic

        Or to put it another way, I’m more concerned about the lack of Black or Hispanic perspectives, than I am about the lack of patient perspectives.

      • SeaDragon29

        I mean, I think part of what the paper’s original authors were trying to get at was the fact that researchers often downplay their own mental health history in order to appear more credible…And people who need more accomodations to function well in academic environments often get shut out before they get to the level where they’re able to direct research objectives.

        I agree that the us vs. them construction is problematic, but the basic call is one for inclusion of people who have been excluded.

        (And, obviously, people with mental conditions that affect the way they write and their ability to participate in science conferences do get excluded or dismissed as less “credible”…)

      • http://cadencegtv.blogspot.com/ Cadence

        I think it’s probably important to point out that there *is* a relevant distinction – power. Who sets the research agenda? Who decides what kinds of approaches or solutions matter to the people impacted by mental illness? While we have to consider financial influences and institutional pressures, the overwhelming answer to that is ‘the research community’. When researchers design these studies, are they valuing and incorporating their own experience of mental illness, or are they shying away from it to maintain ‘objectivity’?

        I don’t know the answer to most of these questions, but they are questions worth asking. That’s what qualitative research is for.

        • http://blogs.discovermagazine.com/neuroskeptic/ Neuroskeptic

          That makes sense, but I still don’t think dualism is helpful.

          I’m both a consumer and a researcher, so how much power do I have?

          As for qualitative research, no-one ever asked me to take part in a qualitative study.

          • http://cadencegtv.blogspot.com/ Cadence

            Maybe mental health is an area where a distinction between researcher and participant isn’t helpful – but that wouldn’t be the case for discussing the experiences of, say, people with Alzheimer’s, or Down Syndrome. This isn’t a new area of discourse. Participatory research, patient involvement, and community engagement are central to caring for and about people with unheard voices. While experience does not mean understanding, qualitative research should and is employed to explore these unheard perspectives, so others can gain insight into those experiences. Lots of great work is done in those areas.

            Still, I think there are probably some important questions to left to ask here:

            1. What does expertise mean in the context of mental health? Is it scientific knowledge, or experiential knowledge? Is it both? What happens when you have both? What happens when you don’t? Power is one level of distinction (i.e., who can pursue this research). Expertise may or may not be depending on how we define expertise. For practical purposes, there might be, given that researchers can use that expertise to design relevant experiments.

            2. With that in mind, are researchers with experience with mental health dissociating those experiences from their research? If so, what could those experiences add to research design, and the goals of applied mental health research? If not, what do they already add?

            Finally, as a ‘consumer’ and a researcher, I would imagine that you have more power to pursue relevant research than people who are just consumers. (I also don’t like the language of health ‘consumer’, but that’s another issue).

  • Anonymouse

    Hm. My first instinct was that sometimes not being faced with (and then likely influenced by) the patient side can make a researcher more… objective, in the same sense in which double-blind studies try to minimize certain biases. (And then I started wondering how that kind of knowledge is different from any other kind of knowledge. And then I thought that maybe researchers should be randomly assigned to conditions where they have that source of knowledge or not. And then I felt very silly.)

    Concerning “I’m not sure that my ‘lived experience’ of mental illness does give me a special insight into it”:
    I agree with you that experiencing something is not the same thing as understanding it, yet I do think that having this experience gives special* insight that is not available to someone who hasn’t. So when I read about depression I often find myself understanding something in a very visceral way, but it’s also clear that language is generally not rich enough to communicate experiences that aren’t shared to some degree (as everyone who has made the alienating experience of trying to explain what depression is like to someone, who just hasn’t had that experience will probably agree with). And, I mean, this is just guessing, but I find it very easy to construct scenarios, where the rich, non-communicable actual experience can inform a researcher.

    * So, “special” is tricky to use here, since I’m convinced that people researching mental deviance are much more likely to fall into that group themselves, making “them vs us” even less convincing a point of view.
    (I just decided to google that and one of my other favourite blogs has a post on this: http://mindhacks.com/2008/02/15/them-and-us/ )

    • Rhonda Thissen

      “Mental deviance”? Really?

      • Anonymouse

        Um, I’m not a native, so I might be missing out on some connotation here. If you view whatever behaviour you’re looking at as a distribution, though, then by “mental deviance” all I mean is a behaviour that lies more far from the mean, so that it might be labeled “mental illness”. I tried to avoid the latter term to stress the continuous nature of this difference that is casually treated as a categorical one.

        • Rhonda Thissen

          OK, thanks for the clarification. “Mental deviance” in the US has a really negative connotation.

          • Anonymouse

            What would be a more neutral term?

          • Rhonda Thissen

            In the context of this article and discussion, I would suggest simply “mental illness” or “mental health challenges.” In my opinion, a term like “deviance” is more appropriately used when talking about statistical principles, as in standard deviance or deviance from the norm. When applied to humans, it’s much less friendly. :)

          • Bill C

            funny, “abnormal” has sort of the same story

          • Rhonda Thissen

            Definitely! Abnormal for whom? :-)

          • Bill C

            somewhere some distance (significant?) off of the mean

  • usethebrainsgodgiveyou

    I recall someone, maybe you…mentioning the ability to look at your own disease some what objectively, scientifically…noting the physiological manifestations, knowing the basis…was somewhat freeing and allowed you a detachment from the typical descent into a fear based paradigm, a typical struggle that makes things worse.

  • Clarence C.

    I was recently a subject in a study that was assessing eating and exercise habits. I filled out the same very long survey four times over a year, and each time I found myself wanting to talk to the researchers, because for several questions I thought that the response choices were all somehow mischaracterizing my eating or exercise habits. So I think at least in the context of surveys with multiple choice responses, interacting with subjects and asking them whether they think the response choices provide an option that faithfully represents them may be important.

    • Emily Baltz

      I’ve definitely had that happen to me as a participant. I participated in one study where researchers were trying to measure my social anxiety and one question was a likert scale asking me to assess how strongly identified with the statement “I get nervous around the opposite sex”. This question was supposed to get at attraction but for someone who wasn’t heterosexual, this question wouldn’t be answering what the researchers were trying to ask.

      It’s important that researchers get feedback from participants or at least other researchers, because they may have insights and experiences that differ from those of the primary researchers.

      • https://twitter.com/iucns iucns

        Dear Clarence, dear Emily,

        While I fully concur with your points, researchers often use standardized measures (particularly questionnaires). It is difficult to adjust these measures for participants, because it is important to the interpretation of their results that every respondent is exposed to the same information (as well as that the responses fall in line with previously established scoring norms).

        Nonetheless, I believe there will be hardly any scientists who would not appreciate a word on the side or brief written comment, alerting them to the potentially insensitive nature of a question which they may have missed.

        This is because, of the researchers I know, they care as much about the ethics of their work as they do about the accuracy of their outcomes.

  • KFOAG

    Two points. First, I wonder if part of the intention of the authors is to highlight the need for a more postmodern approach to “hard” science.
    Second, in psychotherapy, one of the dangers that novice trainees face is the risk of “empathic consonance” where similarities in experience between therapist and client could lead the therapist to neglect the differences, especially subtle ones.

  • http://finishagent.com Gina Hiatt

    I agree with the idea that if you have an ongoing, almost daily conversation with people, you gain insights into their experiences that you might not otherwise get.

    When I was a grad student at McGill University, working with Brenda Milner, I used to administer cognitive testing as part of my research and also my RA stipend. I became so interested in hearing about their disease had impacted their life, that I felt the testing got in the way. I wanted to research the impact that the brain surgery these patients were having on their emotions. That idea was quickly nixed. That’s when I knew I’d better switch from neuropsychology to clinical psychology.

    When I founded the Academic Writing Club (dot com), in which we run daily accountability groups online for professors and grad students who want to write and publish more, I never intended to get data. But it’s been eye-opening to learn that when people confide to each other every day (in these online groups) we can really understand at a more granular level what gets them stuck and interferes with their productivity.

    After starting the AWC through my company, Academic Ladder, Inc., I decided to start another company, Finish Agent® Inc, to license my software so that other coaches could run daily accountability groups for their clients. They are finding the same thing: amazing clarity into the issues of their clients.

    None of this is research, but I understand what the Australian researchers meant. If you do too many research studies that look at the sum of the parts, so to speak, you may miss the “little” variables that may be just as important.

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  • Anthony Stratford

    Thank you for your interest in our paper and this thoughtful
    discussion. I am a person with lived experience and work closely with my
    psychiatry, neuroscience and other colleagues where my opinion and expertise is
    requested and respected. If we came across as encouraging a “them and
    us” perspective this is unfortunate and definitely inadvertent. I think
    this does not take away from our primary point that having opportunities to
    speak from – and influence – from a lived experience perspective – that is
    formalised and endorsed in neuroscience will be positive for all.

    • http://blogs.discovermagazine.com/neuroskeptic/ Neuroskeptic

      Hi Anthony, thanks for the reply! I agree that lived experience can offer insights – as I said, I’ve learned about depression from reflecting on my own illness. And from listening to other peoples accounts of their illness.

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  • MentalIllnessPolicy

    Thank you for this. I’ve had cancer, but you don’t want me treating you

    • Rhonda Thissen

      Assuming you are attempting to conflate peer support with medical treatment, please don’t. Peer support is designed to be adjunct to clinical services, not a replacement for it.

    • http://www.kyrani99.wordpress.com Kyrani Eade

      This is not always true. I’ve had cancer 8 times and after two spontaneous remissions I looked into the matter using Vipassana or insight meditation and that enabled me to discover enough to deliberately effect all the subsequent cancer remissions. So I am able to help others do the same.

      I agree that lived experience gives insights but these are essentially knowledge. However if you use the occasion to investigate the matter further you do have the potential to arrive at deep understanding. And I would say much more so than a scientific researcher. A researcher’s work is really as good as the question they ask. If the question opens up a new understanding then it becomes productive. But too many researchers ask questions that will get them brownie points from big pharma and/or the journals. Their work is poverty.

      Working together with the patient, both the researcher AND the patient can arrive at a deeper understand and one that may lead to health.

      Have a look here https://kyrani99book1.wordpress.com/
      Kyrani99

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  • JonFrum

    The premise here is that those who suffer from a mental illness have some certain knowledge of their own condition. They certainly have knowledge of how they PERCEIVE their experience. Science is not, however, built upon subjective reports.

    As a stutterer, I see the same thing in my own world – therapists who claim ‘you are the expert of your own stuttering.’ No, I am not. I filter my understanding through layers of memories and guesses – none of which are based on scientific study. The fact is that stutterers make claims about their own condition that can objectively shown to be incorrect. How many ordinary walkin’-around people out there are rigorous thinkers? How many set aside the time necessary to analyze their own condition objectively? Damn few.

    This is just another effort to flatter the patient/client – the flip side of ‘blaming the victim.’

  • Don Crawford

    When science discovers the “etheric body,” the real human body, and the chakras and nadi’s, esoteric nervous system, and how these so far invisible energies have relevance to mental illness, will bring a whole new approach to this division of research.

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Neuroskeptic is a British neuroscientist who takes a skeptical look at his own field, and beyond. His blog offers a look at the latest developments in neuroscience, psychiatry and psychology through a critical lens.

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