The tech industry and Silicon Valley have been lobbying the Trump Administration for policy changes that, they argue, would make it easier for patients in the U.S. to download their medical records onto their smartphones. But this change, journalists Arius Tahir and Adam Cancryn report in Politico, has privacy advocates worried that the privacy of millions of patients could be seriously compromised.
“If proposed policy changes go through, patients would be able to download their health records onto their smartphones and direct it to apps of their choice,” Tahir and Cancryn explain. “But there’s a major privacy pitfall: as soon as those records leave the software system of the doctor or hospital, they are no longer protected by HIPAA, the landmark medical privacy law.”
HIPAA stands for the Health Insurance Portability and Accountability Act of 1996.
The changes that Silicon Valley has been pushing for, according to Tahir and Cancryn, “might allow for unprecedented convenience, letting patients more easily share data for a second opinion or enabling a researcher to find participants for a clinical trial. But it also opens up a Wild West of data sharing on the most intimate health care details for millions of Americans. ”
White House Senior Adviser Jared Kushner has been a major proponent of the proposed change, which Tahir and Cancryn note could “upend the health technology sector and generate a windfall for Silicon Valley giants and startups alike.” But Epic, known for health care software, has been expressing privacy concerns and filed a lawsuit against the U.S. Department of Health and Human Services (HHS).
“Central to Epic’s argument are privacy fears,” Tahir and Cancryn observe. “And privacy and consumer advocates, hospitals and health systems are divided. Some agree the privacy challenges haven’t been thought through; others believe Epic is opportunistically trying to protect its market dominance.”
According to the Politico reporters, “Privacy hawks see an ironic threat: giving patients more control over their health data will ultimately result in them losing that very control. Once data is shared, privacy restrictions become looser, supercharging a burgeoning industry built on vacuuming up and reselling Americans’ medical information.”
Jeff Chester, executive director of the Center for Digital Democracy, told Politico, “This is not about interoperability; this is about having access to data. The health data is going to give them insights into many other aspects of your life.”