Health-Related Data Rights, Privacy Debated at Panel

Consumer education is needed to make people aware of their privacy rights as more health data is put online and/or stored electronically, a civil liberties advocate said at an event Thursday. The event was declared otherwise off the record in the middle of the program. Privacy concerns related to an individual’s health records were discussed at the panel hosted by the Center for Democracy & Technology. Panelists included FTC Commissioner Julie Brill; Corinne Carey, assistant legislative director, New York Civil Liberties Union, who was the one panelist who agreed to speak on the record; Ben Heywood, co-founder of PatientsLikeMe; Indiana University law professor Nicolas Terry; and Chris Boone, executive director of the Health Data Consortium. Panelists discussed whether sharing health data would help medical professionals accurately diagnose patients and help researchers find cures for medical conditions more quickly, whether the Health Insurance Portability and Accountability Act should be abolished, expanded or amended, who owns the rights to health data, and the need for consumer education when it comes to digital health care rights -- especially as wearables and health apps become increasingly popular. Privacy doesn't matter to consumers until their information is revealed, Carey said, and most consumers believe they're protected by HIPAA -- the most misunderstood law, she said, that doesn't include the word privacy in its acronym. "Privacy laws are decades old" and patients don't own the rights to their health records -- the creators of those records, the health providers, do, she said.