Private Lives, Public Issues
Jeff Professor Addresses Privacy Issues of Health Data
In this day and age, everyone leaves behind a long and detailed digital trail. As more health data moves online, personal health information will constitute an ever-increasing proportion of this data trove. This raises a difficult but crucial policy challenge: How to make the most of health information while respecting personal preferences, privacy and transparency?
According to Drew Harris, DPM, MPH, professor of Population Health and director of the Health Policy program at the Sidney Kimmel Medical College at Thomas Jefferson University, aggregating health data from the multiple outlets in which it exists—pharmacies, insurers, social network records, etc.—offers a benefit to society. Population health research can benefit from accessing “real-world evidence.” The cure for many diseases could lie in the collected health records of millions of patients. And yet, all patients are entitled to privacy.
Harris says that protections are necessary for navigating the health data superhighway, and there must be policies that ensure the delicate balance of privacy and access to information that could benefit the greater good.
“We need to recognize that the value of all this data is not just for individual care. Legitimate health researchers should be granted access to our de-identified—stripped of identifiable information—health records. Anyone who abuses the privacy mandate or uses the data for unauthorized purposes must go to jail. Security must be the highest priority because maintaining trust in the purity of the process should be sacrosanct,” he says.