Congressional Democrats introduce bill to safeguard health data

The legislation would forbid companies from using health information for "discriminatory, unrelated or intrusive purposes."
By Kat Jercich
03:25 PM

Sen. Richard Blumenthal (photo credit: Wikimedia Commons)

Democratic legislators have introduced a bicameral bill to address the potential spread of personal data as COVID-related health surveillance increases.

WHY IT MATTERS

State and federal agencies have called for effective contact tracing and digital monitoring technology to attempt to stem the spread of COVID-19. Even as technology companies rise to the challenge, however, privacy and consumer advocates have expressed concerns about data security during and after the crisis.

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On Thursday, U.S. Sens. Richard Blumenthal, D-Connecticut, and Mark Warner, D-Virginia, along with U.S. Reps. Anna G. Eshoo, D-California, Jan Schakowsky, D-Illinois, and Suzan DelBene, D-Washington, introduced a bill to require companies that collect data for public health purposes to delete the information 60 days after the emergency ends.

The legislation, dubbed the "Public Health Emergency Privacy Act," would forbid companies from using the data for "discriminatory, unrelated, or intrusive purposes" and aims to prevent the "potential misuse of health data by government agencies with no role in public health," according to a press release.

Spokespersons for DelBene's office told Healthcare IT News that data privacy is a "major priority" for the representative both now and after the pandemic.

"We must use every tool available to ensure a robust public health response to the COVID-19 pandemic," said DelBene in an emailed statement to Healthcare IT News. "We can protect our public health efforts while addressing personal privacy concerns." 

"I support this pandemic-specific privacy legislation because it achieves a mutual goal of many privacy-minded lawmakers in Congress," DelBene continued. "However, more needs to be done to broadly protect Americans' sensitive personal information at all times."

The Democrats' proposed legislation comes on the heels of a Republican-introduced bill in the Senate seeking to protect consumer data. Like the Public Health Emergency Privacy Act, that bill requires companies to obtain consent before collecting health information for COVID-19 tracking and mandates transparency in the use of that data. It also requires deletion or de-identification of data after the crisis has passed. 

Neither bill has yet gained significant traction in Congress.

"This measure sets strict and straightforward privacy protections and promises: Your information will be used to stop the spread of this disease, and no more," Blumenthal said in a statement. 

"Legal safeguards protecting consumer privacy failed to keep pace with technology, and that lapse is costing us in the fight against COVID-19," he continued. "Americans are rightly skeptical that their sensitive health data will be kept safe and secure, and as a result, they're reluctant to participate in contact tracing programs essential to halt the spread of this disease."

THE LARGER TREND

Healthcare industry groups have come forward supporting the rights of patients to safeguard their information in the face of rapidly innovating tracking tools. 

Earlier this week, the American Medical Association released new privacy principles urging lawmakers to enact a "privacy law [that] protects the sacred trust at the heart of the physician-patient relationship." 

"Patients are less willing to share information with physicians for fear that technology companies and data brokers will have full authority over the use of their indelible health data," AMA President Dr. Patrice A. Harris warned.

Meanwhile, the Office of the National Coordinator for Health IT and the Centers for Medicare and Medicaid Services have moved to enable increased data-sharing capabilities through their interoperability and information-blocking rules, enacted with the aim of giving patients greater access to their health information. 

ON THE RECORD

"Communications technology has obviously played an enormously important role for Americans in coping with and navigating the new reality of COVID-19 and new technology will certainly play an important role in helping to track and combat the spread of this virus," said Warner in a statement.

"Unfortunately, our health privacy laws have not kept pace with the privacy expectations Americans have come to expect for their sensitive health data," he continued. 

"I fear that creeping privacy violations could become the new status quo in health care and public health. The credibility – and indeed efficacy – of these technologies depends on public trust," he said. 

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich
Healthcare IT News is a HIMSS Media publication.

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