What happened to the HHS Health Data Network?

In early 2020, as they tried to fight covid-19 in two rural North Carolina counties, Granville Vance’s public health staff found themselves at a dead end, relying on outdated technology to track the rapidly spreading pandemic.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 several decades old and complex. The other was made from Excel spreadsheets. None of them worked well together or with systems at other levels of management.

“We used a lot of resources, putting an excessive amount of data into multiple systems that didn’t necessarily scale to interact with each other or with the federal level,” Harrison said.

The poor interface between systems meant that staff often lacked an understanding of what was going on elsewhere in the state and out of state. According to Harrison, employees relied on “watching news broadcasts every morning to get the latest and greatest updates from other levels of government.”

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The pandemic, which has claimed the lives of more than 1 million Americans, has highlighted an inefficient data infrastructure in the US healthcare system in a country home to some of the world’s most powerful tech companies: Coronavirus case reports are being faxed. Clumsy technology to monitor the spread of a vaccine – and big gaps in keeping track of who got the shot. State level data is out of sync with federal figures. Supply chain disruptions that left healthcare providers without the necessary protective equipment.

And Congress was aware of the potential for these problems long before the coronavirus. Legislators directed the Department of Health and Human Services to better integrate US data management systems so that stakeholders could better share information years ago, in 2006, well before the pandemic.

Public health officials, data scientists and government auditors said the problems caused by these communications outages could have been minimized if federal health officials had followed the order.

They said there were many reasons why the system was never created: the complexity of the task and insufficient funding; a federal approach to healthcare that deprives state and local agencies of resources; unclear ownership of the project at HHS; insufficient enforcement mechanisms to hold federal officials accountable; and little agreement on what data is needed at all in an emergency.

And today, even after the lessons of the pandemic, experts fear that the ideal remains a pipe dream, given the number of stakeholders, the lack of federal leadership, and a divided Congress.

“What keeps me awake at night is that we forget about the last two and a half years and just move on – that we don’t use the opportunity and time to really reflect and make the necessary changes,” Soumi Saha said. , Senior Vice President of State Affairs at Premier. The technology and supply chain company works with hundreds of thousands of healthcare providers and contracts with federal health agencies.

The Pandemic Preparedness and All Hazards Act of 2006 directed federal officials to create a system to monitor emerging health threats.

The law gave HHS two years to establish a “public health situational awareness” network to detect and respond to “potentially catastrophic outbreaks of infectious diseases and other public health emergencies occurring at home or abroad.”

Congress re-approved the law in 2013 and gave HHS another two years to build the network. In 2019, the law was updated to become the Pandemic and Hazard Preparedness and Innovation Act, which again called on HHS to build the network – and audit progress in three years.

According to a US Government Accountability Office report released in June, HHS has yet to establish a network or develop a roadmap to do so.

“Three laws later, they haven’t received any penalties,” said report author Jennifer Franks, director of information technology and cybersecurity at the GAO.

Franks said the agency’s management hadn’t even decided which operating unit should take the lead, so no one did.

Capabilities included the Centers for Disease Control and Prevention, which already operates a number of systems that monitor health threats, and the Strategic Preparedness and Response Administration. ASPR was established as the office of the Assistant Secretary for Preparedness and Response in 2006; it was promoted to an operating unit last year, putting it on par with the CDC.

Merging public and private data systems into a single national system is a mammoth task that becomes even more difficult when there is no shared vision of what the network should look like, said Lauren Knizer, who worked at ASPR during the Obama and Trump administrations. She now leads emergency preparedness and response programs at PointClickCare, an IT company that processes data for hospitals, aged care facilities, and government agencies.

“If you asked 10 people, you would probably get 10 different answers because there is no consensus,” Knizer said.

In addition, different hospitals often use different electronic health record systems, so they are often unable to share patient data with each other, much less with the federal government.

Federal officials should start by deciding what data they need in an emergency, and then figure out what tools they already have — and what they need — to collect and share that data, Knizer said.

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This needs to be led by the White House, she said, because it requires many parts of the government to “get along well with each other.”

The Consolidated Spending Act, passed in late 2022, established the Office of Pandemic Preparedness and Response Policy, a new center of power in the executive branch that could get the ball rolling.

But state and local health officials are wary of top-down decisions, even as they acknowledge gaps in national health data systems.

Dr. Karen Landers, chief medical officer of the Alabama Department of Public Health, said a sudden directive in late 2020 to use a new tracking system specifically for coronavirus vaccines likely slowed her department down.

Her state already used the CDC Vaccine Tracking System to manage vaccine supplies and “probably could be more efficient” if they stuck to it.

“We needed a little more local involvement to say, ‘Hey, you know, I think this really works better. If you want us to use the system, we will, but let’s not do it right in the middle of a pandemic,” Landers said.

Lori Tremmel Freeman, CEO of the National Association of County and City Health Officials, said it was even harder for local health officials.

They only had access through government channels, she said, and “as a result, they didn’t have a clear idea of ​​where vaccines were going in their own communities, including partners outside of public health.”

This means more work for local health authorities, officials say, making quick decisions much more difficult.

When approached for comment, ASPR officials first forwarded KHN to the CDC. CDC officials referred KHN to HHS.

HHS told KHN that it is “committed to protecting the public health of the nation and is working to update the GAO on our progress and will have more information for the public in the near future.”

HHS also told auditors it is “working to expand its public health situational awareness network, defining roles and responsibilities” to finally put in place the long-awaited preparedness system.

But HHS efforts could be a major setback: Much of a 2019 bill to create a data sharing network expires in September, and re-approval of the law could be a problem in a divided Congress, where House Republicans have announced their intention. to study the US response to the pandemic.

“Now Congress has the opportunity to create a public health system,” said Dr. George Benjamin, executive director of the American Public Health Association. “What are they doing? Undermining legitimate public health authorities, demonizing public health officials. Like we haven’t learned anything.”

Kaiser Health News is a national health policy news service. This is an editorial independent program of the Henry J. Kaiser Family Foundation and not affiliated with Kaiser Permanente.

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