Patients are usually the subject of scientific studies, not the designers. But a new effort is trying to bring patients’ priorities to the forefront in research on mental health.

For months, the Milken Institute and the Depression and Bipolar Support Alliance have been collecting the perspectives of patients with depression or bipolar disorder. The first-of-its-kind survey poses a question patients don’t often get asked: What questions about your health and experience with depression or bipolar disorder would you most like research to help you answer?

The responses have poured in. Since launching the survey in August, more than 5,600 people have taken part.

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“The hardest thing I’ve gone through with my med team is the trial and error of medications,” one respondent wrote. “I’ve felt like a guinea pig for years. It would be nice to have only had to go through one med and had it work.”

Cara Altimus — an associate director at the Milken Institute Center for Strategic Philanthropy who helped manage the project — said those voices are critical to research and drug development.

“As we think about what the goals are in research and developing new therapeutics, those goals need to be in alignment with what people with these conditions are really seeking,” she said.

On Wednesday, the research team will present some of their preliminary findings at the Milken Institute Future of Health Summit in Washington. Both people with depression and those with bipolar disorder said that good treatments are their top priority. But there was another answer that quite frequently cropped up.

“They just want to know what’s causing it,” said Altimus.

The research also suggests that roughly two-thirds of people report first experiencing symptoms of their condition during adolescence. The younger a respondent was, the more likely they were to report an adolescent onset, though it’s not clear why that’s the case.

Experts say the Milken Institute’s work is a sign of a cultural shift that places more emphasis on the patient’s perspective in research.

“The entire field is moving toward listening to people and finding out what they want,” said Dr. Ken Duckworth, the medical director of the National Alliance on Mental Illness. “Designing research studies, we should involve the patients quite directly.”

The survey also asked people to define what wellness means to them. Broadly speaking, respondents named two big factors: the ability to function and physical health.

“It means stability; well enough to hold a job, well enough to enjoy activities, well enough to feel joy and hope,” one person wrote.

“Feeling physically healthy. Not having my day-to-day life interrupted by my conditions,” another said.

Most respondents, 73 percent, said depression or bipolar disorder has taken a significant toll over their lifetime. Just under half said it has caused a significant impact over the past year; 34 percent, over the past month; and 22 percent, that day.

Altimus said it’s critical for researchers, drug companies, and organizations that fund studies to take patients’ considerations into account in their work. Melissa Stevens, executive director of the Milken Institute Center for Strategic Philanthropy, said she is hopeful that the final report on the survey — expected out early next year — will push the research community in that direction.

“We hope that foundations, the NIH, and pharma companies can really use this to see the pulse of the patient community,” she said.

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    • Setting up these groups seems pretty popular. The data collected could be profitable, and if enough people ‘engage” like they did on Facebook, you can pick up a few corporate sponsors.

  • The labeling (of a psychiatric condition) itself can have a big negative impact on patients. This could happen through negative expectations (nocebo effects) and epigenetic mechanisms. Also, several studies have shown worries and stresses can lead to even Alzheimer’s.
    For example, check out the following studies:

    M. J. Katz et al., Influence of Perceived Stress on Incident Amnestic Mild Cognitive Impairment: Results From the Einstein Aging Study. Alzheimer Dis Assoc Disord. 30, 93-98 (2016).

    Johansson, et al. (2014). Midlife personality and risk of Alzheimer disease and distress a 38-year follow-up. Neurology, 83(17), 1538-1544.

  • It’s about time these Doctors, Counselors, Scientists begin to start having patients input!

    I am now 35 (Diagnosed with Bipolar at age 21) and it took many many years of medications and suffering until about 3 years ago when I was able to put this illness in complete remission.

    From when I was diagnosed until about 3 years ago my life has done a complete 180 for the better! And I have decided to reach out and help others who are Bipolar.

    It is good to see progress with this illness!

    Please visit my Twitter if you have a chance:
    https://mobile.twitter.com/CureforBipolar

  • It is really disturbing that this is presented as “novel’ or “innovative.” It illustrates how little impact the people who are subjected to these treatments, stigma, and industry driven misinformation have on the industry funded “research.” One would think that with so many treatment models failing, rising rates of “Mental Illness” Suicide and Despair, that this would have been a priority. It is really clear that industry funded advocacy, and Pharma marketing campaigns, to “Spread Awareness” have not worked at all. In fact not much has improved in 50 years, while profits soar. The US has the highest rates of suicide, mental illness, and general despair of any developed nation. Instead of fact based policies, we have industry driven marketing, misinformation, and profitable offshoots devoted to pseudo science. We have all been lied to and sold a bill of goods. Corporate Profiteering and denial, seems to be the only factor here.

    • I completely agree with you on many different levels. We need to start eliminating the stigma that is attached to this disorder as well!!

      More and more needs to be done, and even though society acts “accepting” of mental illness, it is sadly far from reality.

  • As daughter, sister, mother, and cousin of persons diagnosed with anxiety and depression, the answer as to “why?” is very important. I also suffer from these disorders. Information is helpful as is acceptance by others and oneself. Genetic predisposition is obvious.

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