Congress told HHS to set up a health data network in 2006. The agency still hasn’t.
The network would let parts of the health system share information during emergencies. It still hasn’t been planned, even after the communication and data-sharing failures put on display during the pandemic.
In early 2020, as they tried to fight covid-19 across two rural counties in North Carolina, the staff of Granville Vance Public Health was stymied, relying on outdated technology to track a fast-moving pandemic.
Lisa Macon Harrison, the agency’s health director, said her nurses’ contact-tracing process required manually entering case information into five data systems. One was decades old and complicated. Another was made of Excel spreadsheets. None worked well together or with systems at other levels of government.
“We were using a lot of resources putting an inordinate amount of data into multiple systems that weren’t necessarily scaled to talk to each other or to the federal level,” Harrison said.
That poor interface between systems meant staff often lacked insight into what was happening elsewhere in the state and beyond. The staffers relied on “watching the news shows every morning to get the latest and greatest updates from other levels of government,” Harrison said.
The pandemic, which has killed more than 1 million Americans, highlighted ineffective data infrastructure across the U.S. health system, in a country that’s home to some of the world’s most influential technology companies: Coronavirus case reports sent by fax machine. Clunky tech for monitoring vaccine distribution — and major gaps in tracking who got jabbed. State-level data out of sync with federal figures. Supply chain breakdowns that left health care providers without needed protective equipment.
And Congress knew about the potential for these problems long before covid. Lawmakers mandated the Department of Health and Human Services to better integrate U.S. data management systems to allow stakeholders to better share information years ago, in 2006 —long before the pandemic.
Public health officials, data specialists, and government auditors said the problems caused by these communications failures could have been minimized had federal health officials followed the order.
They said there are many reasons the system was never created: the complexity of the task and inadequate funding; a federal-first approach to health that deprives state and local agencies of resources; unclear ownership of the project within HHS; insufficient enforcement mechanisms to hold federal officials accountable; and little agreement on what data is even needed in an emergency.
And today, even after the lessons of the pandemic, experts worry that the ideal remains a pipe dream given the number of stakeholders, a lack of federal leadership, and a divided Congress.
“What keeps me up at night is that we forget about the past 2½ years, and we just move on — that we don’t take the opportunity and time to truly reflect and make needed changes,” said Soumi Saha, senior vice president of government affairs at Premier. The technology and supply chain company works with hundreds of thousands of health care providers and contracts with federal health agencies.
The 2006 Pandemic and All-Hazards Preparedness Act charged federal officials with creating a system to watch for emerging health threats.
The law gave HHS two years to build a “public health situational awareness” network to detect and respond to “potentially catastrophic infectious disease outbreaks and other public health emergencies that originate domestically or abroad.”
Congress reauthorized the law in 2013 and gave HHS another two years to build the network. The law was updated in 2019 to become the Pandemic and All-Hazards Preparedness and Advancing Innovation Act, which called again on HHS to build the network — and for an audit of progress after three years.
According to a report from the U.S. Government Accountability Office released in June, HHS still has not created the network or developed a road map to do so.
“Three laws later, they have not received any penalties,” said report author Jennifer Franks, director of information technology and cybersecurity at the GAO.
Franks said agency leadership never even figured out which operating division should take the lead, so none did.
Possibilities included the Centers for Disease Control and Prevention, which already manages a number of systems tracking health threats, and the Administration for Strategic Preparedness and Response. ASPR was established as the Office of the Assistant Secretary for Preparedness and Response in 2006; it was elevated last year to an operating division, putting it on par with the CDC.
Pulling together public and private data systems into a single national system is a mammoth task made even harder when there’s no single vision for what that network should look like, said Lauren Knieser, who spent time at ASPR during the Obama and Trump administrations. She now runs emergency preparedness and response programs at PointClickCare, an IT company that handles data for hospitals, senior care facilities, and government agencies.
“If you asked 10 people, you’d probably get 10 different answers, because there is no consensus,” Knieser said.
Also, different hospitals often use different electronic health record systems so are frequently unable to share patient data with one another, much less with the federal government.
Federal officials should start by deciding what data they want in an emergency, Knieser said, and then figure out the tools they already have — and the ones they need — to collect and share that data.
The White House should run the effort, she said, because it requires so many parts of the government “to play nice with each other.”
The omnibus spending bill passed in late 2022 established the Office of Pandemic Preparedness and Response Policy, a new power center in the executive branch that could get the ball rolling.
But state and local public health officials are wary of top-down solutions, even as they acknowledge gaps in the nation’s health data systems.
Dr. Karen Landers, chief medical officer with the Alabama Department of Public Health, said the sudden directive in late 2020 to use a new tracking system specifically for covid vaccines likely slowed her department down.
Her state already used the CDC’s Vaccine Tracking System to manage vaccine supply and “probably could have been more efficient” if they’d stuck with it.
“We needed a little more local input, to say, ‘Hey, you know, I think this would really work better. If you want us to use the system, we will, but let’s don’t do that right in the middle of a pandemic,’” Landers said.
Local health officials had an even harder time with the system, said Lori Tremmel Freeman, CEO of the National Association of County and City Health Officials.
They had access only through state channels, she said, and “as a result, they did not have easy visibility into where vaccines were going in their own communities, including to partners outside of public health.”
That meant more work for local health agencies, officials said, which made it much harder to make quick decisions.
When contacted for comment, ASPR officials first directed KHN to the CDC. CDC officials directed KHN to HHS.
HHS told KHN it is “committed to protecting the nation’s public health, and is working on updating GAO on our progress, and will have more to share publicly in the near future.”
HHS also told auditors it was “working to enhance its public health situational awareness network by defining roles and responsibilities” to finally create the long-awaited preparedness system.
But there could be a major roadblock to HHS’ efforts: Much of the 2019 bill mandating the data-sharing network’s creation is set to expire in September, and reauthorizing the law could be a challenge in a split Congress where House Republicans have announced their intention to examine the U.S. response to the pandemic.
“Congress has an opportunity now to build the public health system,” said Dr. Georges Benjamin, executive director of the American Public Health Association. “What are they doing? Undermining public health legal authorities, demonizing public health officials. It’s almost like we didn’t learn anything.”
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.