USA TODAY International Edition
Reform America’s medical data access
COVID- 19 shows faults in public health response
I remember being at the White House in March of 2020. We were frantically trying to figure out how close the U. S. health care system was to collapse. How many people were actually in the hospital with COVID- 19? How many intensive care unit beds did we have available? How many ventilators?
“We don’t really know,” was the answer from top health officials.
“Why the ( bleep) not?” bellowed President Donald Trump, as I recall.
Well, the truth was, we didn’t have the authority to compel hospitals and health care institutions to report that information to the government – so most didn’t.
We’ve come a very long way since then. From the president of the United States being unable to get this information to make significant national crisis response decisions, to most Americans now being able to get local data via realtime dashboards from their state health departments. But the problem is, the government’s authority to continue collecting this information – and the public’s ability to access it – may disappear.
Authority at risk
At the beginning of the pandemic, data like SARS- CoV- 2 test results and hospital capacity assessments were literally inaccessible to the Centers for Disease Control and Prevention. Thanks to the efforts of countless individuals during the prior administration, these issues were temporarily ameliorated – in large part by a national public health emergency declaration.
The declaration gave Department of Health and Human Services the authority to require reporting of the testing and hospitalization data that local, state and federal public health officials use to guide our collective pandemic response. Once the emergency declaration is lifted, however, these federal authorities and the data flows could go away.
The pandemic has revealed many faults in our public health response capabilities. The CDC now has no direct legal authority to lead and coordinate what or how much of our national public health data is collected. The result is a fragmented system with inconsistent reporting across 50 states and thousands of jurisdictions. Moreover, to access that data, CDC must negotiate data use agreements with each jurisdiction and for each public health matter.
Our national public health operating picture is inefficient and unable to support the modern, interoperable data sharing environment that we need to prepare for, and respond to, future and ongoing public health threats.
These issues significantly hampered our ability to respond to the pandemic, as we were not only building the plane as we were flying it, we were also doing it blindly.
Fortunately, there is a bill being debated in the Senate, the bipartisan Pandemic and Public Health Preparedness Response Bill. This legislation intends to “strengthen the nation’s public health and medical preparedness and response systems in the wake of the COVID- 19 pandemic.”
Unfortunately, there doesn’t so far seem to be a full acknowledgment that the ability to collect and analyze data is the very foundation of our national ability to strengthen our hand as we continue to deal with COVID- 19 and new coronavirus variants that are sure to come our way.
Further, for those who do hope that we are soon able to transition to a new phase of the pandemic – one where we aren’t in a perpetual state of emergency – lack of authority through federal legislation means the White House either gives up the ability to track and report pandemic data, or it’s forced to extend the emergency indefinitely to ensure health officials can continue getting said data.
Hospitals, clinics and labs that report to public health face a multiplicity of reporting requirements that vary by jurisdiction. A federal ability to coordinate reporting could reduce this unnecessary burden on providers by streamlining requirements.
State authority ends at the state border, but health threats don’t. A nationally led and coordinated approach to data sharing, access and stewardship can enable essential data for public health threats and surveillance, reducing blind spots for everyone.
The ability to coordinate what is reported and set basic standards for public health reporting will give the U. S. government a national, integrated situational awareness of health threats that would enable local action, and robust national coordination and response.
Unifying data around the nation
Put simply, Congress must give the CDC and the HHS the authority to lead and coordinate data reporting, stewardship and sharing across our complex public health ecosystem. Those agencies should receive that data synchronously with state, local, tribal and territorial partners.
Unifying the nation around a common approach to data collection and sharing will benefit the entire public health ecosystem. This will support public health data infrastructure that is timely, representative, attendant to privacy standards and accessible to public health partners at the local, state and national levels.
We’ve learned a lot during this pandemic about where our response systems are inadequate, and we’ve made substantial progress in addressing those inadequacies.
Now is not the time to go backward on an issue as important as our ability to see, collect and share critical public health data. Health officials, governors and the president of the United States should never again have to ask why the ( bleep) don’t we know what’s going on in a health emergency.
Dr. Jerome Adams, a former U. S. surgeon general, is a distinguished professor and executive director of health equity initiatives at Purdue University. Follow him on Twitter: