Tech firms, others gain waiver to share patient data, raising privacy fears
The waiver, published by the Department of Health and Human Services, seeks to make it easier for public health authorities to utilize patient data in the fight against COVID-19.
The Trump administration waived some patient privacy rules for thousands of companies that have access to sensitive personal health data, including tech giants such as Google, with officials calling it an important step and advocates warning that the nation's battle against coronavirus is eroding privacy norms.
The waiver, published by the Department of Health and Human Services late Thursday, seeks to make it easier for public health authorities to utilize patient data in the fight against COVID-19, said Roger Severino, director of HHS' Office for Civil Rights.
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Severino told Protocol the waiver was granted after unspecified companies with large repositories of patient health data asked for it. The companies wanted to be able to share the information with public health authorities freely, without fear of violating the strict patient privacy rules enshrined in the 1996 Health Insurance Portability and Accountability Act, or HIPAA, he said.
The Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services and state and local health departments "need quick access to COVID-19-related health data to fight this pandemic," Severino said in a statement. "Granting HIPAA business associates greater freedom to cooperate and exchange information with public health and oversight agencies can help flatten the curve and potentially save lives."
Severino said that the CDC needs information on infections and treatment to track the spread of the virus and identify hot spots. "We're aware of some difficulties of being able to get the needed health information data to the CDC," he said.
The waiver permits thousands of companies that have access to patient health information as part of their work with hospitals and health care providers to use and disclose that information directly to a broad swath of government agencies, provided the company does so in "good faith" and "for public health activities … or health oversight activities."
The companies include medical billing agencies, accountants, attorneys and IT consultants, as well as tech firms that help hospitals manage and analyze patient data, among many others. Such privacy waivers are exceedingly rare, but have been issued during past health crises and in this current crisis.
On March 18, HHS issued a waiver to facilitate telehealth medicine during the outbreak. That waiver made it clear that doctors needing to transition to telehealth because of the pandemic could do so quickly without worrying they would be in violation for using videoconferencing software that was not strictly HIPAA-compliant.
Privacy advocates said this latest waiver was far more open-ended than past waivers.
"It's unprecedented. We've never seen anything like this," said Pam Dixon, executive director of the World Privacy Forum, a nonprofit organization focused on privacy issues. "When HHS puts out a HIPAA waiver, it needs to be very narrow and very specific. This is carte blanche for any business associate to use and disclose data they hold if their actions meet a vague 'good faith' criteria."
One company with such data is Google, which in August 2018 signed a contract with Ascension, a St. Louis-based chain of 2,600 hospitals, doctors' offices and other medical facilities. "Project Nightingale" gave the Silicon Valley tech giant access to personal health details of millions of Americans in 21 states.
The Wall Street Journal exposed the project last November, prompting a formal inquiry by HHS' Office for Civil Rights and questions from Sens. Elizabeth Warren, Bill Cassidy and Richard Blumenthal, who penned a letter to Google demanding answers. Dissatisfied with Google's response, the senators sent a follow-up letter to Ascension on March 2.
"This is definitely a milestone in terms of the public dissemination of this data," said Albert Fox Cahn, the head of the nonprofit Surveillance Technology Oversight Project, referring to the waiver. "But of course Google has been using this data and much more invasive information for years."
Though unrelated to data covered by Thursday's waiver, Google put some of its vast data trove on rare public display on Friday. It published Community Mobility Reports, using location data to track public movement in the U.S. and 130 other countries amid the virus outbreak and orders to shelter in place.
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Google said in a blog post that the movement tracker could help health officials manage the coronavirus pandemic. It said the data is anonymized, aggregated and taken from users who have turned on their location history setting.
"We've created in these private companies a surveillance operation on a scale of a midsize nation," Cahn said. "Even though these tech companies have been helpful with some privacy safeguards so far, there is no legal framework to stop them from crossing lines we're uncomfortable with if the crisis progresses."