Is Service-User Research Possible in Mental Health? An Interview with Diana Rose

Dr. Diana Rose wears many hats—academic, researcher, service user, and activist. She is a leading figure in user-led research and currently an Honorary Distinguished Professor at the Australian National University. Dr. Rose was previously Professor of User Led Research and Director of the Service User Research Enterprise (SURE) at King’s College. She was also lead in Patient and Public Involvement in several large research programmes at the Institute of Psychiatry, Psychology, and Neuroscience.

Apart from an impressive set of publications, Dr. Rose’s new book Mad Knowledges and User-Led Research is about to hit the markets. In today’s interview, she brings together her vast breadth of experience and depth of knowledge to talk about the challenges service users and survivors of psychiatry face when they take space as knowers and researchers in the Psy-disciplines.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Ayurdhi Dhar: Could you tell us what service user or survivor research is?

Diana Rose: In this research, everything is done from the standpoint of being both a survivor and a researcher. It’s not an additive thing, it’s a synthetic thing. You use service user experiences to inform everything you do. Language sharing is very important to individual persons who embody these things. Their challenges are taken for granted which you have to bring to light.

Dhar: What are some of the challenges that you faced and victories you encountered when you did this kind of research?

Rose: The worst thing is false welcoming. You get seduced into thinking that they (non-service user researchers) really want you there, but actually it’s for their benefit. That’s a lesson that I learned pretty early on. There are challenges in methods, in working together with people who are not survivors. Psy-disciplines are empiricists that don’t deal in concepts, and concepts are very important.

Dhar: What do you mean?

Rose: Epistemic injustice—mad people are positioned as not being able to know, not credible knowers, not having a discourse of their own. It’s very difficult to articulate your experience if you are systematically discouraged for doing that. Psy-discourse individuates so that you can’t get together and collectively talk about what these things are.

Dhar: The language used when a survivor talks about their experience folds everything into the narrative of Psychology. “I am really scared this will happen” turns into “the patient sounds paranoid.” These narratives have a huge effect on people. Being scared due to one’s experience with the mental health system turns into paranoia, which is situated inside you.

Rose: That’s what I mean by individualization. A patient complains to their doctor about their landlords. Some psychiatrists might write to the landlord but most think “Is this complaint paranoia? Is it a hallucination?” They’re ripping people away from their material and symbolic environments, just focusing on what’s going on internally in their head. Psychology is worse than psychiatry when it comes to this.

Dhar: I once had a friend experiencing what we now know as akathisia due to antipsychotics—burning, pain etc. I thought he was hallucinating. Now I know otherwise. Psychology’s language allows you to capture and interiorize that.

Rose: Years ago when I was in the old asylums, the nurses never told you these things. I would get restless legs, couldn’t sit still. Another patient explained to me it was a drug side effect. I realized other patients knew an awful lot and were willing to share it, and the nurses let you think it was part of your illness.

Dhar: What are some of the challenges that service users and survivors face when they try to participate in research?

Rose: Both psychologists and psychiatrists see you through a double lens. They’re interested in your diagnosis. They’re interested in what’s the matter with you, and so your identity as a researcher is moved away. Especially when I did work about ECT (electroconvulsive therapy), it was always “Why did she have ECT? What’s the matter with her?” They are basically seeing you as a patient, and that’s disheartening.

It’s complicated because you want this double synthetic identity but you don’t want to be reduced to “patient” as conceived by psychiatrists or psychologists. It’s not about “this is the matter with me.”

Dhar: How do service users deal with this stigma and assumptions about them? Researchers might say “we have open arms and minds” but that’s not always the case.

Rose: We did some work on ECT commissioned by the government. There was hostility towards it from the steering group which comprised of many psychiatrists and methodologists, mainly quantitative. They asked us to do a systematic review of consumers’ perspectives on ECT and we did. I can do research and they were a bit surprised. They said at a meeting “we won’t take the service users first because they’ll have nothing to say.” Then we did our presentation, me and my colleagues who had had ECT. They were gobsmacked.

You can get demoralized being treated this way. It’s difficult because people need their jobs so they can’t be super critical without getting into trouble. Some decide to play the game or might genuinely want to maximize their research experience at the expense of their survivor experience. People get sucked in. I’ve been sucked in.

Dhar: What’s the most important user research you have ever seen?

Rose: A recent one was very brave. It looked at hate crime against people with mental health diagnosis. Most mainstream researchers wouldn’t touch that. It was a small intensive user-led interview study, and it brought to light what people have to suffer because of their diagnosis—the kind of abuse, like being burgled, having feces put through their door. It hasn’t had an awful lot of publicity, but it’s good research.

Dhar: You said sometimes service users are sucked in. How can research be conducted in which that does not happen, in which their experiences don’t get co-opted? Sometimes researchers choose service users who say things they like. Have you seen that happen?

Rose: It happened to me. I had no idea and I left the project and took my name off. I said I didn’t want to be an author on any more papers from that project. I was out of work for 10 years and living on benefits. I was just so happy to have a job. The research turned out to be ridiculous, all about measurement. They just wanted a badge and to an extent they got it for a while, and then I left.

Dhar: What are some of the ways we bulldoze the voice of service users in this research?

Rose: If you’re medicated, you’re a bit like a zombie—not that easy to get up at half past seven in the morning. Then there’s cooption. Power comes in different forms, from coercion and cooption, to seduction… Cooption happened with this idea of recovery. It started out with service users and got turned into a treatment by psychologists and psychiatrists, individualized instead of collectivized.

Peer support is another one. It used to be groups where people would talk about and reflect upon their experiences. Now you get peer support workers, one or two. They have a difficult job because they’re there because they’ve got experience, but they’re supposed to be further along in their recovery journey. They’ve got to disclose but they mustn’t break boundaries. But where’s the boundary? You don’t know what you can disclose and what you shouldn’t.

Only recovery stories are allowed so you delete the distress, abuse, violence. If you can’t tell a recovery story you feel guilty because you haven’t recovered, one more thing you fail at.

Dhar: We can barely pin down what is a mental disorder and who has it, let alone who is recovering.

Rose: It was supposed to be an antidote so the biochemical model and to the idea that psychosis was inevitably degenerative, so you can give people hope and they can live meaningful lives even in the presence of “disease.” But it became individualized and normalized that you’re supposed to choose your own goals, but some goals are off limits. I mean, if you prefer your own company to other people, that’s not good enough, you’re supposed to have social networks. If you give up looking for a job because you’ve got a rubbish CV and all the jobs are terrible, that’s not allowed, because you’re supposed to be working. The normal autonomous choosing self-containing personal and social networks—that’s what a recovered person is according to this particular model.

Dhar: When it comes to epistemic injustice—the fact that certain voices are prioritized over other people’s voices—what has been the most awful example you have encountered?

Rose: There was a paper about why people from Black and Minority Ethnic (BAME) groups don’t take their medicines. They concluded it was due to BAME family culture. But if you look carefully people talked about poverty, colonialism, violence on the housing estates where they live. They weren’t heard because researchers were looking for a reason why they didn’t take their medications, and were not listening to the stories of distress. It was one of the worst pieces of research and it was supposed to be co-production.

Another example from my own work: We ran some focus groups of people who had been in inpatient wards. One guy told this story about nurses talking behind his back in a language they thought he couldn’t understand, but he could. He could speak 12 languages. I wrote this and the principal investigator said, “You can’t put that, and that can’t be true. People like him can’t speak 12 languages.” I said, “He comes from Kenya. In Kenya there are lots of languages that’re semantically and syntactically quite similar. It’s common to be able to speak 12 languages.” But I had to take out the quote.

Dhar: The BAME family culture—many of my students often say this—“People of color don’t seek mental health help because family culture.” I have to deconstruct that idea—what makes you think that the help they get will be useful? Jonathan Metzl and Helena Hansen’s work is useful. Given their history with mental health treatment, why should BAME families trust the system?

Rose: It is so Eurocentric.

Dhar: So, tell us about your journey. How did you end up studying these things?

Rose: I wasn’t, as we say in Scotland, “to the manor born.” My mom was a maid for a very rich family. My dad was a butcher until he went bust. It was very patriarchal and xenophobic, and so to get away and because I met people who were going to university, I thought I’ll give that a shot. In fact, I took my final exams in a mental hospital; it was my first admission. They gave me insulin coma therapy. My first job was in sociolinguistics, teaching and lecturing for 10 years, and then I was medically retired because I couldn’t hide it anymore; I was just bananas at work.

I lived on benefits for 10 years and got involved in the survivor movement which changed everything. I was told I should never try to get a job again. Later I moved to the Institute of Psychiatry. I was so relieved to be back in a university that I was taken in for a bit and I’m not proud of it. Gradually I saw what was going on and didn’t like it. I’m much happier now I’m retired. I can say what I like.

Dhar: You have written about knowledge co-production and, while trendy, you write that it is deeply complex. Could you say more?  

Rose: I don’t think you can do it in mental health because ultimately your colleague has the right to take away your liberty and treat you involuntarily. I don’t think co-production is possible between survivors and mainstream researchers. It was a very hierarchical unit where I worked.

I’ll give you an example. These are big projects with loads of investigators. On analysis days after data is in, you go away for few days as a group to analyze it. In the actual meetings the principal investigator tells the statisticians what statistical test to run. In this meeting they ran test after test after test. The null hypothesis was supported every time, everybody was depressed, and then whoops, a significant result! Whoops of joy around the table! They made it look like this conclusion was arrived at seamlessly, and all this messy underneath was invisible.

Dhar: It’s data torture.

Rose: I mean, 20 non-significant results, one significant result—that’s chance. That science is not pure, objective, neutral. The Psy-disciplines think the data speaks for itself, believe it or not!

I had a debate with a high-profile psychiatrist who said, “You have a table of p values. It tells you what the data means.” I said, “No, no, you’re interpreting that table.” He wouldn’t shift.

Dhar: There was a recent paper that proposed that the Psy-disciplines should not even be doing hypothesis-driven work. Given how much we know about the replication crisis in psychology, maybe it’s time to revisit what we call research in the first place. So, what would be a legitimate, good way of doing research?

Rose: I do a lot of conceptual work. For example, in a seminar of critical theory in psychiatry we were all bandying around this word “individualism,” and I asked, “what do you mean by it?” Nobody could answer. What I mean by it is what we were just talking about—a complaint becomes paranoia—a complaint is not a complaint about something in the environment that is real. It’s just a symptom.

So, first I will shift the spotlight on people’s conditions of existence and develop a theory of what is it that drives people mad. What are the conditions that sustain it, because some people have one psychotic break, and that’s it. Other people get sucked into the system for life. I like the concept of structural violence and social suffering.

About the methods—we have to consult much more with the community and with activists—what makes sense in terms of your life for us to understand it, for us to compare and contrast. Participatory research, ethnography, photo voice, experience sampling, video diaries, and those kinds of things where people are talking about their lives related to their illness.

I would take mental health out of health; they’re just not the same. Mental so-called health is a crisis of living and not as medical. But it’s a crisis, it’s an interruption. You have to address people’s conditions in life if you’re going to support them.

There’s another part of epistemic injustice, there’s a so-called hermeneutic gap. We don’t have a style of thought to articulate what it is happening to us and why it’s happening to us.

Dhar: What are the dangers of conflating mental distress or crisis of living and calling it a health issue?

Rose: Individualization is part of the medicalization of mental health. It’s stripping off people from their contexts. It needs to be placed in its conditions of existence.

Dhar: Your 2003 review was about patient perception of ECT. What did you find? Could you talk about your experience of being a part of this research?

Rose: We compared peer-reviewed articles. We found 29 articles written by clinicians and 9 by service user groups or in collaboration with them. We looked at perceived benefits, memory loss, absence of information, consent, and emotional trauma. We found that there was a vast discrepancy in reported benefit between mainstream papers and the papers that were produced by user groups.

When it came to memory loss and lack of information, the survivor papers and the mainstream papers reported the same proportion of people saying they had long-term memory loss or didn’t have enough information, but they interpreted them differently. Mainstream papers reported 60% people said they didn’t have enough information, but the papers didn’t discuss it; they were completely silent on it. When it came to long-term memory loss, which psychiatry always said didn’t happen, our reference group said it did. The mainstream papers said it was because of the depression, whereas the survivor papers said it was because of ECT. You get the same raw data, but different interpretations.

Also, we had testimonies from the internet of people who’d received ECT, and they supported the survivor papers. We were offered publication in the high-profile British Medical Journal, but they didn’t want the testimonies. We argued and they argued back and we gave in because everybody said it’s such a high-profile journal.

Dhar: How was the paper received?

Rose: Some people tried to tear it to pieces. People tried various ways of ameliorating memory loss, like giving people ketamine at the same time as the anesthetic. Some people supported it. If you look at the Royal College of Psychiatrists’ website now, their page on ECT, they don’t mention us. They say some patients and some user groups say that ECT causes permanent damage. The word research does not appear.

Dhar: That is a big omission. Not “some research suggests, but some patients say…”

Rose: It got so much publicity, but that’s how it stands now. It’s just the opinion of a user group. The number of people who received ECT in the U.K. has dropped from 11,000 a year to 2,000 a year. I’m not saying we’re responsible for that, and some people are very cross because they think it’s a good treatment.

Dhar: What role has psychology played in the execution and legitimization of the austerity measures in the UK? Psychology is linked to social control.

Rose: There’s a very good paper by Lynne Friedli and Robert Stearn, and they use the term psycho-compulsion. In the welfare benefit system, there’s a regime with conditionality. There are certain things you have to do or you’ll lose your money. We thought only medicines could be delivered by coercion, but one of the things that you have to do if you’re in a certain group is attend cognitive-behavioral therapy (CBT). We are made work-ready. Unemployment has become a condition to be treated by CBT, and psychologists are in job centers. You have to show up for your CBT session every week or your benefits stop. There is resistance, but it’s difficult because if you’re too vocal or active, then you might be seen as fit for work and lose your benefits.

Psychologists are complicit with the regime of austerity, supporting it, making it legitimate, supporting the horrible narrative of “scroungers not strivers.”