Drawing on Mental Health "Experts-by-Experience"

An estimated 43.6 million American adults—nearly one in five—have mental illness. Anxiety and mood disorders, including depression, are the most common forms. While these conditions are usually treatable, clinicians often don’t have a good way to predict who will respond to which therapies, so patients may have to try different types of treatments.

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Two leaders of MoodNetwork, one of the partner networks that make up PCORnet, the National Patient-Centered Clinical Research Network, know this issue well. PCORnet is a PCORI initiative to harness the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.

Andrew A. Nierenberg, MD, is principal investigator of the network as well as director of the Bipolar Clinic and Research Program at Massachusetts General Hospital, and Roberta Tovey, PhD, who lives with treatment-resistant depression, is a patient partner, a writer and designer, and the MoodNetwork’s director of communications. Nierenberg and Tovey are among the speakers at a June 9 Capitol Hill briefing on Patient-Centered Mental Health Research, sponsored by PCORI and the National Alliance on Mental Illness.

PCORI spoke with them about the research needed to improve treatment of mood disorders, and how patients and their families can contribute to this work.

Why do we need a clinical research network dedicated to mood disorders?

Roberta Tovey: One of the things that is so frustrating about treating mental illness is that there is not enough evidence for saying any one treatment is going to work for, say, your depression or bipolar disorder. If you walk into a doctor’s office—an excellent doctor, the best, one who knows as much as there is to know—that doctor will say, “Well, we don’t really know what’s going to work, but my intuition says we should try this.”

Andrew Nierenberg: With our network, we are building a website that patients should find useful, with a set of tools, blogs, community forums, and things like that. They can use the tools to track their mood and bring that to their clinicians. But we are also gathering up a large community of people whom we could collaborate with to do the studies that would be important to them and that would ultimately inform their care.

Roberta Tovey: Research in the past 20 years or so, with the small numbers of participants and the short length of studies, has not really been conducive to giving clear results. Even if you find one medicine that works better than another, in a study of 100 people for six months, you still have the problem of not being able to say that it’s going to work for everybody. It’s too small a study, and it hasn’t gone on long enough. One of the hopes of our network is that when we get a lot of people, we’ll be able to do large-scale comparative effectiveness research studies that will be really useful for treatment.

How did you get involved with the network?

Andrew Nierenberg: We’ve never really had a project that had patient engagement before. This opportunity through PCORI and PCORnet looked absolutely terrific and novel. Working so closely with patients to design the network has been really interesting, eye-opening research for me.

We refer to people with the disorders as “experts-by-experience.” They are truly experts in what it’s like to live with a mood disorder. Our approach is very different than the usual paternalistic “We know better; we’re going to tell you what we need; then we do the research; then we produce a paper; and that’s it.” What we’re hoping is that we can do research that is important to people because it has been co-created with the people who are experts in having mood disorders.

Roberta Tovey: Andy asked me to be part of the study when it was still in the grant-writing stage. As somebody who has lived with major treatment-resistant depression for a good part of her life, my own experience has been that most of my therapists have not been particularly interested in my opinion. I’ve been treated very much as a passive observer. I’ve actually had therapists get angry at me. I was practically thrown out by a therapist because I didn’t want to take a medicine he prescribed.

For me, the idea was incredibly exciting that, as a patient, I would actually be listened to, to find out what I had learned over 40 years of depression.

We’re really talking about a sea change in the model of care and research in mental health. In mental health until now, researchers research, clinicians prescribe, and patients do what they’re told. The network is all about giving patients a voice. People with psychological conditions are integral to the process.

Can you provide an example of how people with mood disorders affected the network?

Roberta Tovey: We have a network survey of what research people think is important to do. The thing that comes out number one is addressing the stigma of mental illness. That was unexpected. Another topic that comes up very high is alternative treatments. We are now working on two research plans testing alternative treatments: yoga and mindfulness.

Andrew Nierenberg: For a study we’ve proposed that will use the network’s data, we asked parents of kids who have bipolar disorder what research design made sense to them for testing therapies. In one design, you give the child one therapy and if the child doesn’t get better on that therapy, you switch to another. In another design, you have a child take both therapies at once. The survey showed that the parents preferred not combining therapies—they were particularly worried about side effects. So we designed our proposed study with the children taking one therapy at a time.

We invite others with mood disorders, or those who support them, to join the network! It has much to offer its members—and we in turn welcome members’ opinions and experiences to shape our future work.

The views expressed here are those of the authors and not necessarily those of PCORI.