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Get rid of junk data to avoid more pandemic shutdowns

Coronavirus crisis has exposed tech gaps in our health care system

Lockdowns and stay-at-home policies may be losing favor now, but they’ll be back in the “second wave” of COVID-19 unless governors and the Centers for Disease Control and Prevention start getting the data they need for smarter, more targeted decisions.

So far, our coronavirus policy has largely been based on flawed statistical models and the musings of public health officials. Even those committed to shutdowns, like New York Gov. Andrew M. Cuomo, have bemoaned the lack of hard data to show which pandemic response works best. Without such information, the same inaccurate sources that drove the first shutdown (e.g., researchers at Imperial College London) will continue to influence our decisions. 

America is vulnerable to junk health data because we’ve failed to develop anything better, despite our clear technological advantages. This gap has contributed to the ham-handed, one-size-fits-all policies embraced by so many governors and public health officials. To this day, the medical community has no clear way of knowing who has tested positive, been hospitalized or recovered from the coronavirus.

One reason is how data is reported. Today, providers transmit aggregated, outdated information to state health departments that then fax — yes, fax — them to the CDC. Much of this is inaccurate due to the CDC’s own reporting requirements. For example, states must report mortality statistics that include not only those killed by the coronavirus but also those who had “coronavirus-like symptoms” (like pneumonia) or listed COVID-19 among other comorbidities.

The inadequacy of America’s health data infrastructure has been exposed during this pandemic. Much of the state and local data relies on paper records, phone calls and spreadsheets that require manual entry. Doctors, nurses, lab techs and other health care professionals often report this late since it requires extra effort that’s not part of their normal workflow. There is no automated way to send case reports from labs or doctors to the CDC. In fact, less than 10 percent of reports are transmitted in a format that can be easily accessed and readily used.

No wonder Dr. Deborah Birx of the White House Coronavirus Task Force reportedly said, “There is nothing from the CDC that I can trust.” The situation became so bad that Vice President Mike Pence had to formally ask hospitals to start emailing daily lab results to the Department of Health and Human Services so the highest levels of government had some idea what was going on.   

We need to get smarter faster. Improving access to accurate, real-time information on COVID-19 is second in importance only to finding vaccines and treatments. More testing is no panacea — it won’t improve decision-making unless the medical community can access and analyze that data in real-time. In a pandemic, such information must not be limited to a patient’s own hospital or doctor’s office. 

The good news is Congress has appropriated $1.5 billion to upgrade the technology the CDC uses to track and respond to the virus. Since the history of government-designed technology systems is checkered (see Obamacare enrollment website, Electronic Health Records mandate), the data platform should be funded by the CDC but designed by the private sector, providers and standards setting organizations that have a proven track record of success.

The CDC’s goals should be to:

  1. Standardize all data so every provider and government agency reports it exactly the same way.
  2. Create a way to automatically collect the data during providers’ normal workflow. They shouldn’t have to sacrifice time with patients to report it. 
  3. Ensure all data is reported electronically and in real time. No more paper transmissions that have to be entered by hand.
  4. Share the public health data with doctors, nurses and pharmacists who need it to treat patients.
  5. Create a system run exclusively for medical professionals — not a government database that hordes information and occasionally publishes reports.  
  6. Ensure strong privacy and security protections.

These reforms are first steps toward helping policymakers come up with smarter, more targeted responses to pandemics. We should never again have to base life-and-death decisions on junk data, foreign or domestic.

Joel White is the executive director of the Health Innovation Alliance, a coalition of patient groups, provider organizations, employers, insurers and other stakeholders that advocates the use of data and technology to improve health care.

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