The Challenges of Sharing Psychiatric Data

Adam Kaplin, M.D., chief psychiatric consultant at Johns Hopkins Hospital in Baltimore, wants everyone to be aware that depression is the biggest killer of heart attack patients during the year after their surgery. Not smoking, not high cholesterol, but an insidious mental illness that, like other mental illnesses, has serious physical repercussions.

"Cardiologists should know that they need to pay extra attention to depressed patients because they're at much greater risk, since these diseases interact with each other," Kaplin says.

But how do they know which patients are depressed? Often they don't, unless the patients tell them.

Kaplin has struggled to share his patients' information with the other doctors who care for them, but has found institutional reluctance to facilitate that kind of sharing, even with an electronic health record system available.

And Johns Hopkins is not alone. Kaplin and fellow Hopkins researchers recently surveyed whether mental health information is being shared at the top 18 hospitals on the 2012 U.S. News and World Report ranking. Only 44 percent were storing their psychiatric records electronically at all, and only 28 percent were sharing those records with physicians outside psychiatry.

Moreover, the team found that sharing psychiatric information correlated with significantly lower patient readmission rates. Their study was published online in December in the International Journal of Medical Informatics.

If sharing is that rare at the top hospitals, despite the apparent favorable impact on care, it's safe to assume it's even rarer at the average hospital, Kaplin says. "There's still a tremendous stigma surrounding mental illness, and the only way we'll move forward is to start treating it like other somatic illness," he says. "We psychiatrists know that these illnesses are no different than hypertension or diabetes. They're chronic conditions, not personal weaknesses, and there is a biological basis to them."

The direct and indirect costs of mental illness and substance abuse are a huge toll on the overall health of the country. The National Alliance on Mental Illness estimates that the mental illness costs the economy $79 billion annually, including $63 billion in lost productivity. If indirect costs are included-for example, mentally ill people who lose their jobs, are underemployed or unemployed, the costs may be as much as $193.5 billion. The U.S. spends about $135 billion treating mental illness and addiction every year, not counting dollars spent on physical illnesses that are complicated by mental illness.

Until recently, behavioral health information (a blanket term covering both mental health and substance abuse treatment) has been sequestered by both law and common practice, and behavioral health professionals have guarded it jealously. With good reason: Patients who aren't assured of confidentiality might not be honest with their providers, or might avoid seeking treatment at all, because of the stigma surrounding problems of the mind.

"You could put my entire medical history on a billboard and I wouldn't care, but people with psychiatric conditions are in the worst position to understand what should be shared about their care," says John Houston, vice president of privacy and security at University of Pittsburgh Medical Center. "Lots of people with serious psych disorders are being appropriately cared for and able to be productive, but they are very concerned about people knowing they have some disorder or issue." His wife runs a large psychiatric hospital, which makes him unusually aware of the quandary inherent in sharing such sensitive information.

However, the need for coordinated care is overtaking the impulse to be secretive. Both the Office of the National Coordinator and the Substance Abuse and Mental Health Administration are funding projects to facilitate the sharing of behavioral health data with other providers.

Why has it been so difficult to share behavioral health data? The main reason is that it's hedged with legal safeguards. The laws are designed to maintain patient privacy except in life-or-death emergencies, but they also have had the effect of discouraging the use of computers to store information pertaining to mental health and substance abuse treatment.

Psychiatry and psychology are among the least automated sectors in health care. Solo and small practices are the norm, and most treatment involves listening and writing prescriptions. "The technology for psychiatry is a pen and an [electroconvulsive therapy] machine," Kaplin says. "We've been so far behind our brethren disciplines."

Elizabeth Gardner’s cover story in the July issue of Health Data Management, “Proceed with Caution,” examines the status and challenges of bringing mental health care into the electronic era.