HIPAA May Curb Patient Engagement

A lot of time is spent discussing HIPAA and its place in the world of information security and patient data access. Now, there seems to be a new conversation emerging on the topic: HIPAA may be affecting patient engagement efforts.

That’s right. According to a recent New England Journal of Medicine report, HIPAA could be preventing providers from fully engaging with their patients. A possible solution, the article suggests, would be to let patients opt into a system that allowed for the sharing of protected health information (PHI). This might encourage additional engagement made by patients into their care.

According to the report, such efforts could "meaningfully improve patient engagement with the healthcare system — and therefore health outcomes — while respecting patient autonomy." However, any efforts to share a patient's PHI would likely require changes to HIPAA – which is a long shot. 

In fact, all of this is likely a moot point. Despite many efforts to increase patient engagement through technology, – like patient portals, bluetooth-enabled biometric devices, smartphone applications and text messages – participation remains low. For these tools to be effective, they must “...be accessible, allow for personalized communication, and facilitate instantaneous sharing of information,” says the report. 

At the end of the day, covered entities do not want to face penalties for noncompliance, so they interpret HIPAA conservatively. This could be hindering efforts like patient engagement, the article states. 

Similarly, Healthcare Dive cites a concern that perhaps HIPAA, "...now more than 20 years old, may be outdated." The website points to a recent West survey which found 75 percent of patients with chronic conditions want their doctors to contact them regularly. However, patient portals, a primary driver of patient engagement, are not always mobile-friendly. 

Even the Office of the National Coordinator for Health IT (ONC) believes patient portals are the secret to patient engagement. In its guidebook on the topic, the agency argues that enrolling a patient in a portal is the first step to engagement, because it helps build familiarity. The ONC cites an article from the Journal of the American Medical Informatics Association, which claims patients often never enroll in portals because they: 

  • Don’t remember discussing it with their providers

  • Lack information or motivation

  • Question the value of digital communication

  • Need computer help

To facilitate enrollment, the ONC recommends setting up portals during a patient's office visit. Walk a patient through the log in process and encourage them to stay registered. Offer tips for those with limited computer access. Be sure to give clinicians and staff talking points, so everyone reinforces the same message. Lastly, always guide patients to access the portal to schedule appointments, view recommended screenings, and request prescription refills. 

“Since patients are the best source of information about their health," states the ONC, "they can also act as a second pair of eyes on the record. With patients checking for accuracy, providers can improve the quality of a medical record and make more informed clinical decisions."

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Scott Rupp


Scott E. Rupp is a writer and an award-winning journalist focused on healthcare technology. He has worked as a public relations executive for a major electronic health record/practice management vendor, and he currently manages his own agency, millerrupp. In addition to writing for a variety of publications, Scott also offers his insights on healthcare technology and its leaders on his site, Electronic Health Reporter.

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