Iaura Brown knows that she has high cholesterol and that as a person with bipolar 1 disorder, she faces an even higher risk of cardiovascular problems. It’s constantly on his mind. But going to a doctor for routine care is almost entirely out of the question. She is a 35-year-old single mother whose two children have their own mental health complications and who experiences intense anxiety about leaving her home.
“I know I need it, but it’s hard to find a doctor who isn’t going to look at me like I’m crazy,” Brown said.
Brown, who is covered by the state of Tennessee’s Medicaid program, was unable to find care that could fully meet her needs. So, like many people with serious mental illness — a changing category that typically includes schizophrenia, bipolar disorder and other conditions that cause functional impairment — she often forgoes primary care altogether.
It is well documented that people with these conditions have difficulty accessing medical care, and primary care in particular. The issue has gained increasing 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 whether the increase in research has created positive outcomes for patients on a large scale. Indeed, despite the proliferation of studies, much of the research focuses on individual-level interventions – such as education or material support for patients – that will prove difficult to bring about lasting change at the population level. Experts say there is less research on the much broader structural changes that could be made to health systems in the way they share patient data, assess metrics or coordinate care across specialties.
“As a researcher, it’s much easier to engage at the patient level, to design an intervention that can be delivered to a patient,” said Duke University assistant professor Megan Shepherd-Banigan. In March, Shepherd-Banigan and her colleagues released an evidence map that found that most research on primary care use among people with serious mental illness and homelessness focuses only on individual solutions. “Once you get into a systemic research level, it gets really complex and sticky,” she added.
Studying these structural changes involves implementing them in real clinical settings and observing their effects. Shepherd-Banigan said it 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 this question requires significant buy-in from providers, as well as the time and resources to create programs and follow patients for years. It also takes a willingness to break down the silos that separate physical and mental health care.
“You have to be really creative and get in the heads of the people who are trying to provide this care, and figure out the best way to both engage them in the research, but also make it easy for them to want to keep it going,” said Shepherd-Banigan “They need to see the value in it and really be part of it from the start.”
That’s not to say there isn’t value in trying to improve outcomes at the individual patient level. In another study published in March in JAMA Open Network, researchers tested 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 containing information on diet, exercise and how to quit smoking, printed out and given to a doctor before meeting a patient whose medical records suggested he was was at risk.
“It may seem strange that such a sophisticated decision support system is reduced to a printed piece of 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. Patients who received materials had a 4% lower rate of increased risk than those in the control group who received nothing.
For other experts, this kind of awareness is a great first step. But that’s not enough to address the deep-rooted access disparities or emotional and motivational issues that can affect people with serious mental illness.
“It would be so nice in our lives if knowing that something is good for us, we just did it. But no matter what a person’s mental health status is, things don’t work that way,” said Jasmine Mote, a researcher and professor at Tufts University who focuses on emotional and social differences among people with the condition. schizophrenia and other disorders that can lead to psychosis.
Finding more systemic solutions could alleviate much of this burden for patients who already struggle with other barriers to better health. It could also avoid some of the stigma faced by patients with serious mental illness.
“Clinicians aren’t immune to the other stigmas that anyone has about this population,” Mote said. “They often see them as a ‘difficult’ population to work with.”
For Brown, it’s clear that something in the system needs to change, as she continues to struggle to take care of herself. She often worries about the medications she might be given due to her history of drug use and cannot find doctors who will work with her on a different approach. She would be more comfortable with home care, due to both her anxiety and her difficulty in finding a daycare, or at least a clinic where psychiatrists and primary care providers could talk to her and discuss its needs.
“I need someone to think outside the box with me,” she said. “I wouldn’t want to be treated like a statistic.”