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Wash U professor’s work leads federal officials to listen to mental health patients

An illustration of first aid kit that is shaped like a person's head. It is red with a first aid cross symbol on it.
David Kovaluk
St. Louis Public Radio
Mental health patients aren't included in national patient surveys that ask people about the quality of their treatment. A Washington University professor's advocacy has led to the federal government changing its rules.

A Washington University professor’s research on patients who are hospitalized for mental health problems has prompted Congress to make sure such patients are included in federal health surveys.

The provision included in the federal 2023 budget bill will require providers to ask people who were hospitalized for mental or behavioral health problems questions that could help improve care.

“Patients repeatedly report experiences of dehumanization,” said Morgan Shields, a professor of social work at the Brown School. “And so there's a need to really orient psychiatric facilities providers towards patient centeredness.”

Shields said she wanted to study the experiences of people hospitalized for behavioral health issues, but when she went to look at data on their care, she found it wasn’t there.

That’s in part because the federal government doesn’t include those patients in the national standard survey of discharged adult inpatients, she said. According to federal officials, more than 3 million patients from 4,000 hospitals are surveyed annually.

Hospitals give the survey, called the Hospital Consumer Assessment of Healthcare Providers and Systems, to patients after they leave the hospital. It asks them questions like how often they felt cared for and listened to by their doctors.

The data from the surveys is collated and analyzed by the Centers for Medicare and Medicaid Services. The national data allows health care providers to see where they need to improve, Shields said.

Hospitals often collect patient experiences internally. But the national survey gives a nationwide systemic look at patients’ needs. Psychiatric patients are the only ones excluded from the survey.

“There's of course a foundation of bias and stigma that underpins all of these conversations,” Shields said. “And then there are concerns that psychiatric facilities are unique compared to other hospital settings.”

Mental health patients are particularly vulnerable to substandard care because there is a limited number of providers and patients are sometimes hospitalized against their will, she said.

“If you’re going to have a systematic collection of patient experience in hospitals, but the only group you're going to exclude are psychiatric patients, that is discrimination,” Shields said.

Mental health advocates say patients frequently feel powerless because of the stigma of mental illness.

“It’s not uncommon for them to talk about how they don’t feel like people are taking them seriously," said Anne Milne, a social worker at the Legal Advocacy for Adults with Mental Illness program at the Legal Services of Eastern Missouri. “That can range from their family and friends, it can include service providers, inpatient and outpatient service providers, other systems that they have to engage in.”

After she learned mental health patients were not included, Shields and her colleague Rinad S. Beidas at the University of Pennsylvania wrotean opinion piecein the Journal of the American Medical Association criticizing patients’ exclusion from the survey.

After it was published, federal lawmakers requested more information from the researchers and other advocates at Mental Health America and other groups. That led to the provision passed last year.

Starting in 2031, the federal government will collect patient experiences from mental health patients discharged from hospitals that bill Medicare. While the hospital quality survey has been the standard for many other patients, officials could also create a specialized tool to measure the care of psychiatric patients, Shields said.

Milne, who works with many patients who have been in mental health, said patients often know what’s best for them.

“Especially over time, the more we listen to them, I often learn much more from them about what it is that they need,” she said.

Sarah Fentem is the health reporter at St. Louis Public Radio.