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Linda Rosenberg

Former President and CEO, National Council for Behavioral Health

Hiding Behind HIPAA

July 22, 2015 | Advocacy | Compliance | Healthcare | Comments
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It’s natural for someone who cares deeply about an issue to be zealous.

But some have taken the Health Insurance Portability and Accountability Act to extremes.

HIPAA, as it’s known, is the federal law that – among other things – guarantees medical privacy.

In a continuing care retirement community, Helen Wyvill, 72, tried to find out what had happened to a dear friend who hadn’t appeared for a regular swim and wasn’t in her apartment.

When she went to the staff, The New York Times reported recently, they said they couldn’t release information because of HIPAA.

“The administration says they have to abide by the law, blah, blah,” Ms. Wyvill told the Times. “They won’t even tell you if somebody has died.”

To see the entire story, click here

Clearly this kind of interpretation crosses a line HIPAA never intended to draw.

Yes, our deepest secrets, our most private information, should never be tossed about carelessly. But when family or friends are inquiring about a loved one or want to share what they believe to be helpful information, it’s a different situation – one that calls for more tact and common sense.

Extreme interpretations of HIPAA are applied not only to the elderly but also to those with serious mental illnesses.  The results are family left in the dark and practitioners denied the opportunity to receive information vital to their patients’ recovery.

The Times attributes health-givers’ caution to fear of legal consequences. But, as with most behaviors, it’s complicated.

A few years ago we offered a workshop at the National Council conference, “Hiding Behind HIPAA.”  We called out the legal and consulting industries, which benefit financially from fanning the flames of fear. And we held staff’s feet to the fire asking them whether it’s just easier to use HIPAA to avoid taking the time to deal with the questions and emotions of loved ones.

There is, however, a chance we can clear up a lot of the confusion (and excuses) around HIPAA. Lawmakers on both sides of the aisle are taking steps to bring HIPAA into the 21st century.

Rep. Tim Murphy (R-PA) has heard the complaints and takes on HIPAA in his Helping Families in Mental Health Crisis Act (H.R. 2646). His bill modifies HIPAA to include families as partners and supporters of individuals in treatment. Though some feel his proposals go too far, his bill has sparked important conversations among policymakers and advocates that carry forward the momentum for mental health care reform begun with last year’s passage of the bipartisan Excellence in Mental Health Act.

Rep. Doris Matsui (D-CA), has also heard the complaints and introduced the Including Families in Mental Health Recovery Act (H.R. 2690), legislation that requires the Department of Health and Human Services to codify a HIPAA clarification statement it issued last year. She addresses the need for improved understanding of the HIPAA law by establishing training programs for providers, administrators, patients and families.

“A lot of times it’s just misunderstanding what is and isn’t allowed under HIPAA,” Rep. Matsui told the Times.

That misunderstanding has to end. HIPAA was a good and necessary innovation when Congress introduced it 20 years ago. Now, however, it’s too often an impediment.

Let’s urge Congress to pass HIPAA reform and straighten out this mess.