Beyond HIPAA: Reimagining How Privacy Laws Apply to Health Data to Maximize Equity in the Digital Age

On Wednesday, January 21, the Electronic Privacy Information Center (EPIC) hosted “Beyond HIPAA: Reimagining How Privacy Laws Apply to Health Data to Maximize Equity in the Digital Age.” 

EPIC Senior Counsel Sara Geoghegan moderated a virtual discussion panel with Amir Sadeghi, a Policy and Advocacy Manager at the Center for HIV Law & Policy, Amy O’Hara, a Research Professor at the Massive Data Institute at Georgetown University, and Kierra B. Jones, a Senior Health Policy Analyst at the Center for American Progress.

Unregulated technology, mass surveillance, and weak or nonexistent privacy laws have created a health privacy crisis in which our health data is collected and used to profile us, manipulate our behavior, and charge us more for care. Commercial surveillance fuels practices that push people away from care, including criminalization, constant online tracking, unregulated AI, and data breach. These invasive data practices erode trust in groups that are overpoliced and discourage people from seeking care. Delayed or deferred care worsens health outcomes because health conditions often become more severe when left untreated. Privacy should be baked into health systems and shouldn’t be a luxury.

Our panelists dove into these topics and discussed how our current legal and technological realities threaten our health privacy and undermine health equity. As new technologies allow for improvements in healthcare provisions and medical research, individuals can be pushed away from care due to a lack of trust, fear, stigmatization, criminalization, and barriers to access. Our panelists discussed the role that data privacy plays in health equity and propose solutions to build a healthier, safer, and more privacy protective future.

To dive deeper, read “Beyond HIPAA: Reimagining How Privacy Laws Apply to Health Data to Maximize Equity in the Digital Age“, the full report here.