As research grows on primary care and serious mental illness, a glaring gap remains

Laura Brown knows that she has high cholesterol, and that as someone who lives with bipolar 1 disorder, she faces even higher risk of cardiovascular problems. It’s constantly on her mind. But going to a doctor’s office for routine care is almost entirely out of the question. She’s a 35-year-old single mother whose two children have their own mental health complications, and experiences intense anxiety about leaving her home.

“I know I need to, but it’s hard to find a doctor that isn’t going to look at me like I’m crazy,” Brown said.

Brown, who is covered by the state Medicaid program in Tennessee, has been unable to find care that can fully address her needs. So like many people with serious mental illness — a shifting category that generally includes schizophrenia, bipolar disorder, and other conditions that cause functional impairment — she often forgoes primary care altogether.

It’s well-documented that people with these conditions have trouble accessing medical care, and primary care in particular. The issue has drawn more and more attention over the past decade, with dozens of studies published each year on the intersection of serious mental illness and primary care.

But it’s unclear if the increase in research has created positive outcomes for patients at scale. That’s because despite the surge in studies, much of the research looks at interventions on an individual level — like providing education or material support to patients — that will prove difficult to make a lasting change on a population level. There’s less research, experts say, on far broader, structural changes that could be made to health systems in how they share patient data, evaluate metrics, or coordinate care between specialties.

“As a researcher, it’s way easier to engage at a patient level, to design an intervention that can be delivered to a patient,” said Megan Shepherd-Banigan, an assistant professor at Duke University. In March, Shepherd-Banigan and colleagues published an evidence map that found most research on primary care use among people experiencing serious mental illness and homelessness focuses solely on individual fixes. “Once you get into a systems level of research, it gets really complex and sticky,” she added.

Studying those structural changes involves actually implementing them in real clinic settings and observing their effects. Shepherd-Banigan said this works best when researchers partner with a community of providers to collaborate on an intervention. For example, could streamlining data sharing between social workers and primary care providers improve outcomes for patients with schizophrenia?

Answering that question takes significant buy-in from providers, along with the time and resources to create programming and follow patients for years. It also takes a willingness to break down the silos that separate physical and mental health care.

“You’ve got to get really creative and be in the head of people who are trying to deliver this care, and figure out the best way to both engage them in the research, but also to make it easy for them to want to keep this going,” said Shepherd-Banigan. “They’ve got to see the value of it and really be part of it from the beginning.”

That’s not to say there isn’t value in trying to improve outcomes on an individual patient level. In another study published in March in JAMA Open Network, researchers trialed an intervention to raise awareness of modifiable cardiovascular risks like smoking and high blood pressure in patients with schizophrenia or bipolar disorder.

The proposed intervention was simple: a piece of paper with information on diet, exercise, and how to quit smoking, printed out and handed to a physician before meeting with a patient whose medical records suggested they were at risk.

“It may seem strange for such a sophisticated decision support system to come down to a piece of printed paper, but it becomes a shared decision-making tool in a way that information on a screen really does not,” said study author Rebecca Rossom of the HealthPartners Institute in an email. The patients who received handouts had a 4% lower rate of increase in risk relative to those in the control group who did not receive anything.

To other experts, that kind of awareness is a great first step. But it’s not enough to address the deeply entrenched disparities in access or the emotional, motivational problems that can affect people with serious mental illness.

“It would be so nice in our lives if by knowing that something was good for us, we just did it. But regardless of one’s mental health status, things don’t work like that,” said Jasmine Mote, a researcher and professor at Tufts University, who focuses on the emotional and social differences of people with schizophrenia and other disorders that can lead to psychosis.

Looking to more systemic fixes could take much of that burden off of patients already grappling with other barriers to better health. It could also sidestep some of the stigma that patients with serious mental illness face.

“Clinicians aren’t immune to the other stigmas that anyone has about this population,” Mote said. “They often view them as a ‘difficult’ population to work with.”

For Brown, it’s clear that something about the system needs to change, as she continues to struggle to take care of herself. She’s often worried about what medications she might be given due to a history of drug use, and can’t find physicians who will work with her on a different approach. She’d be more comfortable with at-home care, due to both her anxiety and her struggles to find child care, or at least a clinic where psychiatrists and primary care providers could talk to her and each other about her needs.

“I need someone to think outside the box with me,” she said. “I wouldn’t want to be treated just like a statistic.”