Health Law Daily Wrap Up, HEALTH CARE COMPLIANCE NEWS—Report Offers Diagnosis of Health Care Data Privacy Gaps, (Jan 21, 2026)
The Electronic Privacy Information Center (EPIC) has released a report titled “Beyond HIPAA: Reimagining How Privacy Laws Apply to Health Data to Maximize Equity in the Digital Age,” which examines and offers solutions to the health data privacy crisis.
The health data privacy crisis is a “product of unregulated digital technologies, weak privacy laws, the criminalization of many forms of health care, and growing federal attacks on marginalized communities,” EPIC said in a news release.
The report asserts that technology companies are harming individuals’ health and well-being through the use of commercial surveillance of health data and other sensitive personal information to generate profiles on individuals. Those profiles are sold by data brokers to insurance providers that use targeted advertising and surveillance pricing to make health care more difficult and expensive to access, it says.
The report covers numerous aspects of the health privacy crisis and proposes a “robust data minimization standard as the foremost solution to build a more privacy-protective and healthier future.” Gaps in the Health Insurance Portability and Accountability Act (HIPAA), inconsistent state laws, and inadequate federal protections leave “large swaths of our health data unprotected,” which disproportionately affects marginalized communities, it says.
According to the report, the sale of sensitive information should be banned to prevent that data from being used to profile individuals, and heightened protections should be established for broadly defined categories of sensitive information, including information that reveals individual health characteristics. Those solutions would reduce data breaches as there would be no data to steal.
Data privacy is crucial to health equity, the report concludes. Privacy leads to trust and “trust leads to better health outcomes and improved health equity.”
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