Doug Fridsma: Why amending HIPAA makes sense for research

HIPAA poses an "artificial barrier" to certain types of research that could improve patient care, Douglas Fridsma, M.D., president and chief executive officer of the American Medical Informatics Association (AMIA), says in an interview at Healthcare Info Security.

AMIA has been urging Congress to amend HIPAA to allow use of patients' personal health information without their consent for certain types of "observational" research.

"There are still important safeguards that need to be put in place to maintain the trust that patients place in their providers. The intent was never to open up all research and all data without patients' consent," Fridsma says.

So far, patient PHI can be used without consent only for improving operations within a particular healthcare organization. However, say, if a hospital determines that a surgical checklist reduces post-operative infections in its patients, that finding cannot be published as a research paper without the consent of every patient studied, he says.

"[HIPAA] has this paradoxical effect that says the hospital can use that information to improve its operations, but if it finds something that is tremendously valuable and of generalizable interest, they are not allowed to share that finding more broadly. … So in effect HIPAA is a disincentive to share this generalizable knowledge," he explained.

The changes AMIA is advocating would be only for observational research--somebody noticing a pattern, he adds. This type of research does not involve a treatment intervention.

"People will not be put in clinical trials without their knowledge," he says.

Despite various calls to amend HIPAA, Mac McMillan, chairman of the HIMSS Privacy & Security Policy Task Force, told FierceHealthIT he doesn't foresee any change in the next year, largely due to the political climate.

Meanwhile, the American Health Information Management Association has been on a big push to help healthcare organizations improve their information governance.

To learn more:
- read the interview

Suggested Articles

An assessment looking at 12 health systems that allow patients to download their health records to their smartphones via APIs finds modest uptake.

The National Institutes of Health-led All of Us precision medicine project has enrolled 230,000 participants with another 40,000 people registered.

Hospitals must pursue a deliberate strategy for managing their public image—and a powerful tool for doing so is inpatient clinical data registries.