It was my final psychiatry rotation in medical school, and my job was to tell an Iraq veteran about Post Traumatic Stress Disorder. Although I wore a stethoscope and deepened my voice, the veteran had greater authority on PTSD. She handed me a scientific paper with the newest research on her condition, and I realized she had paid about forty dollars for the article. Gatekeepers (like me!) and paywalls discourage the public from evaluating publicly-funded research. I was stung by the injustice.
A crazy idea came to me: video reports on new findings in psychiatry, featuring interviews with the public. I’m excited to now be doing this video project, called Brainsplain, in collaboration with MIA. In these videos, end-users of mental health resources critique the latest psychiatry research. I summarize new mental health investigations, and patients evaluate the significance. They share their hopes for future therapies and for changes to culture. They also assess ethical issues raised by the research.
My desire to let the public weigh in on research and therapies is rooted in my prior career as a hospice chaplain. I wanted to know why Latino people rarely used hospice, so I joined a Latino Women’s Healthy Heart Council. An older woman leveled with me, “We’ve been handed brochures, but hospice hasn’t offered real partnership where we get to have a say.” Sales-based “outreach” had marginalized these potential users of hospice. They were being treated like passive customers, rather than respected decision-makers and shapers of intensely personal services.
With this feedback, I invited families from minority communities to lead discussions with hospice doctors, nurses, and chaplains. Families talked about their values and traditions regarding end-of-life. After we started including input from black and Latino families, more came to us for end-of-life care. The enduring lesson was that when communities feel stigmatized, patronized, and disenfranchised by the healthcare system, they must be given a platform to express their values.
While doing this work, I noticed a primary care doctor at every meeting for Latino health. His passion to empower Latin American women kept me coming back, even after my hospice project. This doctor did not wear his white coat, and he had nothing to sell. He simply shared developments in medicine, and asked Latino women about their health priorities. He was building a true partnership with the community, in a way I’d never seen. I told him, “I need to be part of this.” He encouraged me, “If you want to devote your life to marginalized patients, consider medical school.” I applied and enrolled.
In my training on the hospital wards, the patients labeled “difficult” were the most compelling to me. These were the psychiatric patients. The power gap between providers and those receiving mental healthcare was a yawning canyon. I saw no equivalent to the Latino Women’s Healthy Heart Council for these disenfranchised people.
Then, when that Iraq veteran sparked the idea for video reviews, I immediately began explaining new research to people I met, and asked to record their opinions for public consumption. I go to VFW posts when research is conducted with veterans. Sometimes I set up a video camera in a public space and invite strangers to talk. Those affected by mental health conditions line up to have a say on what happens with psychiatry research. For example, a philosophy graduate student reflected on a pilot study of a behavior-based therapy for depression: “Why just a pilot study!? When can there be serious funding for less-invasive therapies like this one?” He added, “I go to a psychiatrist with deep questions of the mind, and the answer is always, ‘Try this drug.’ There’s always funding for that answer!”
The interests of institutional medicine can differ from the priorities of patients. Leaders in academic medicine may overvalue new, profitable therapies. Doctors may have different tolerance for risk compared to their patients. Diagnostic categories, while useful to providers, can add to disease burden of patients when labels feel like name-calling.
We accept that the people who evaluate the latest gadgets, movies, and restaurants are end-users of these products and services. The reviewers are not engineers, marketers and business owners. And yet conversations about the significance of new medical research are almost entirely carried on above the heads of patients, who are only later given pre-packaged sales pitches when therapies hit the market. Doctors and researchers often “declare” that they have “no conflicts of interest.” But conflicts of interest are inherent in jobs that are directly and indirectly funded by the business of medicine, and in an academic culture where it’s taken for granted that providers and scientists — not patients — should have control.
It’s time to demonstrate the same respect for the public that we show for scientists and doctors. By engaging directly with patients, we can learn the wants and needs of healthcare’s most important stakeholders. Conversations can reveal unanticipated insights that surprise even the patients. I hope these Brainsplain videos will foster a more honest partnership between the healthcare establishment and the public. I’m eager for your input.