On January 21, 2026, the Electronic Privacy Information Center (EPIC) released a striking new report warning that the United States is facing a growing health data privacy crisis, exacerbated by weak regulations and unregulated digital technologies. The report, titled *Beyond HIPAA: Reimagining How Privacy Laws Apply to Health Data to Maximize Equity in the Digital Age*, outlines the harmful effects of inadequate privacy protections on marginalized communities and the broader healthcare system.
EPIC’s analysis reveals how commercial surveillance practices by major tech companies have led to the exploitation of sensitive health data. These companies harvest personal health information, which is then used for targeted advertising, profiling, and even influencing insurance rates. As a result, trust in the healthcare system is eroding, causing many individuals to delay or avoid necessary medical care.
One of the report’s key findings highlights the disproportionate impact on marginalized groups, who often lack the resources to fight back against the harms of surveillance. EPIC Senior Counsel Sara Geoghegan emphasized the severity of the issue, stating, “We face a health privacy crisis where care is inaccessible due to criminalization, costs, stigma, and the rise of government intrusion into medical care which forces people to delay or retreat from care, worsening their health.”
Unregulated Technologies and the Push for Reform
The timing of EPIC’s report is crucial, with federal actions under the current administration heightening the challenges. The report points to several controversial measures, including cuts to Medicare, deregulation of health technologies, and a weakening of privacy safeguards. These policies, along with increasing government intrusion into healthcare, further undermine protections for sensitive health data, which often falls outside the scope of HIPAA.
In addition to the privacy violations associated with commercial surveillance, EPIC also draws attention to the risks posed by artificial intelligence tools in healthcare, which are often used without proper regulation. The report highlights how these tools operate in legal gray areas, exposing consumers to unnecessary risks. Of particular concern are minors, who face unique vulnerabilities due to the unregulated nature of digital health technologies.
In response to these growing concerns, EPIC advocates for sweeping reforms, starting with the implementation of data minimization standards. The report calls for a future where only the essential health data is collected and retained, arguing this approach would better protect privacy and health outcomes. “We cannot trust tech billionaires that peddle their unregulated technologies, profile us based on our health conditions, and use the federal government to demand more data about us to help us access quality health care,” Geoghegan stated. “We can build a safer, freer, more privacy-protective future.”
The report’s release was accompanied by a panel discussion on January 21, 2026, where privacy experts, legal scholars, and advocates gathered to discuss the pressing issue of health data privacy. The event, titled *Beyond HIPAA: Reimagining How Privacy Laws Apply to Health Data to Maximize Equity in the Digital Age*, sought to address how the absence of strong privacy protections leads to worse health outcomes and deepens inequities within the healthcare system.
Meanwhile, local-level efforts are underway to address the immediate challenges. In an article published on the same day, MageeNews.com highlighted privacy measures being implemented at South Central Regional Medical Center (SCRMC), which has partnered with Epic to enhance privacy for vulnerable groups, including adolescents seeking reproductive health care and individuals discussing mental health or substance use issues. These efforts aim to ensure that sensitive health information remains secure and confidential.
By utilizing the MyChart platform, Epic enables patients to manage access to their medical records and control notifications. The system offers patients and their families more control over who can view their sensitive data, particularly for those in need of privacy for issues such as domestic violence or mental health treatment.
Despite the practical steps being taken at the local level, the report underscores the urgent need for national-level reforms to prevent further erosion of health data privacy. The broader message is clear: the stakes are high, and without stronger privacy laws, marginalized communities will continue to bear the greatest burden of health inequities.
