Is HIPAA Misuse Blocking Patient Use Of Their Data?

Posted on August 18, 2015 I Written By

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

Recently, a story in the New York Times told some troubling stories about how HIPAA misunderstandings have crept into both professional and personal settings. These included:

  • A woman getting scolded at a hospital in Boston for “very improper” speech after discussing her husband’s medical situation with a dear friend.
  • Refusal by a Pennsylvania hospital to take a daughter’s information on her mother’s medical history, citing HIPAA, despite the fact that the daughter wasn’t *requesting* any data. The woman’s mother was infirm and couldn’t share medical history — such as her drug allergy — on her own.
  • The announcement, by a minister in California, that he could no longer read the names of sick congregants due to HIPAA.

All of this is bad enough, particularly the case of the Pennsylvania refusing to take information that could have protected a helpless elderly patient, but the effects of this ignorance create even greater ripples, I’d argue.

Let’s face it: our efforts to convince patients to engage with their own medical data haven’t been terribly successful as of yet. According to a study released late last year by Xerox, 64% of patients were not using patient portals, and 31% said that their doctor had never discussed portals with them.

Some of the reasons patients aren’t taking advantage of the medical data available to them include ignorance and fear, I’d argue. Technophobia and a history of just “trusting the doctor” play a role as well. What’s more, pouring through lab results and imaging studies might seem overwhelming to patients who have never done it before.

But that’s not all that’s holding people back. In my opinion, the climate of medical data fear HIPAA misunderstandings have created is playing a major part too.

While I understand why patients have to sign acknowledgements of privacy practices and be taught what HIPAA is intended to do, this doesn’t exactly foster a climate in which patients feel like they own their data. While doctor’s offices and hospitals may not have done this deliberately, the way they administer HIPAA compliance can make medical data seem portentous, scary and dangerous, more like a bomb set to go off than a tool patients can use to manage their care.

I guess what I’m suggesting is that if providers want to see patients engaged and managing their care, they should make sure patients feel comfortable asking for access to and using that data. While some may never feel at ease digging into their test results or correcting their medical history, I believe that there’s a sizable group of patients who would respond well to a reminder that there’s power in doing so.

The truth is that while most providers now give patients the option of logging on to a portal, they typically don’t make it easy. And heaven knows even the best-trained physician office staff rarely take the time to urge patients to log on and learn.

But if providers make the effort to balance stern HIPAA paperwork with encouraging words, patients are more likely to get inspired. Sometimes, all it takes is a little nudge to get people on board with new behavior. And there’s no excuse for letting foolish misinterpretations of HIPAA prevent that from happening.