Congress must pass reauthorization of the Pandemic and All Hazards Preparedness Act (PAHPA) before the end of the month.
COVID-19 was the worst pandemic in a century. The most fundamental obstacle we had in responding adequately to the virus was the lack of reliable, real-time data to guide public health officials and caregivers. Reauthorization is an opportunity to help fix this.
Throughout the COVID-19 pandemic, most states and local governments were operating off weeks-old data. This resulted in disjointed responses that failed to make effective use of available resources and confused public guidance.
The U.S. Centers for Disease Control and Prevention took a great deal of criticism for its lack of useful information during the pandemic – among other things. Much of that criticism is deserved.
However, we need to be cautious about avoiding a logic trap. We must not focus so much on the CDC that we assume the answer to timely, real-time health data can be found within the CDC. In fact, this is precisely what CDC leaders have proposed. They want all local health data to flow to the CDC first for the agency to analyze, and then spit back out to local health care agencies and providers.
A federal takeover of healthcare data would be the wrong approach. The CDC will never operate fast enough. Plus, it won’t be able to tailor the information to serve specific local needs. Instead, as the saying goes, we need to think globally, but act locally. We need a federated data system that serves local public health needs – but one that is nationally accessible with appropriate safeguards.
Fortunately, there were some bright spots during the pandemic that offered other models to follow. Nebraska had perhaps the best model of using health data to benefit patients, providers, and payers – while improving population health. It created a public-private partnership, now called CyncHealth, with a governance structure that allows providers, payers, patients, and the government a voice in how health data will be used. (At Gingrich 360, we consult with CyncHealth on communications strategy.)
Critically, CyncHealth does not think of itself as a health information exchange, which is the model in most states. Instead, its approach is to serve as a health data utility. Rather than simply moving information from one place to another, the health data utility model builds tools to be used by providers in the delivery of care, and payers (including the government) to monitor population health.
Stakeholder buy-in and client-customer relationships help overcome provider and payer resistance to the information-sharing requirements needed to make any system like this possible.
The benefits of this utility model were on full display during COVID-19. Within weeks of the virus coming to American shores, Nebraska public health officials had a command dashboard monitoring real-time ICU availability and other key data points. It took other states months to develop these capabilities. Some states still don’t have them.
This access to real-time data enabled by Nebraska’s Health Data Utility is one reason Nebraska ranked No. 2 in the National Bureau of Economic Research’s rankings of state responses to COVID-19. Real-time information allowed Nebraska public health officials to tactically deploy resources where they were needed. They didn’t have to rely as much on the blunt tool of lockdowns as states that were operating in the dark.
Nebraska’s Health Data Utility also generated better information for the CDC’s effort to monitor the virus nationally. But critically, Nebraska did not have to rely on the CDC.
This is the basic model we need for health data: infrastructure that serves a local utility purpose for public and private stakeholders that improves quality of care, conserves public resources, and gets appropriate communicable disease data to the CDC.
The advantages of this model go far beyond responding to public health emergencies. The model can also improve quality of care, make it easier for patients to move between providers, help states better manage their Medicaid programs, and more. There is virtually no aspect of health care that would not be improved with better real-time data.
States should take advantage of funds allocated during the pandemic to build their own health data utility infrastructure. States should not try to run it themselves. Instead, they should model their HDU after the successful public-private partnerships in Nebraska that give all healthcare stakeholders a seat at the table. However, to help make it successful, states should require that all health systems, pharmacies, and skilled nursing facilities (our nation’s largest Medicaid and Medicare spend areas) share health data with the newly established utility so they are equally invested in its success.
It is vital that CDC receive accurate, timely information to fulfill its mission. But the fact is, health care is delivered at the local level. Healthcare solutions must be designed to meet local needs. That can only be achieved with local leadership and local buy-in from providers, patients, and public health officials.
Congress should utilize PAHPA reauthorization to ensure states have the resources and guidance to set up appropriate systems.
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