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April 10, 2020 06:00 AM

Big data's role in fighting COVID-19

Merrill Goozner
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    Merrill Goozner

    Merrill Goozner

    Imagine what the nation’s COVID-19 response could be if we had a fully operational national health information exchange that could knit together the electronic health records of every hospital, physician practice and public health agency in the country.

    Instead of the White House task force scrambling to build a reporting system from scratch, it could require each institution to report daily on its bed and ICU occupancy and availability of ventilators and other supplies. It could use that information to redirect goods and medical personnel to the areas of greatest need.

    Instead of the Centers for Disease Control and Prevention relying on its antiquated and voluntary surveillance system to produce 2-week-old estimates of COVID-19 incidence and deaths, it could use the HIE to generate more accurate and timely daily reports. These reports would enable immediate identification of emerging hot spots.

    When sheltering-in-place lifts, those reports would be an invaluable tool for state and local officials charged with tracking new cases and tracing potential exposures.

    Instead of the Food and Drug Administration granting carte blanche emergency use of untested and unproven drugs while awaiting the outcomes of clinical trials, it could collect de-identified outcomes data from their off-label use. While real-world evidence can never replace the scientific rigor of randomized clinical trials, observational data can send powerful signals if they show a major impact or significant harm.

    A national HIE would also generate accurate data about variations in the rates of infection among different groups, empowering public health officials to address issues contributing to the disparities in outcomes in different geographic, racial and demographic groups.

    We don’t have a national HIE today. But the backbone for one is in place. All we need is the political will to build it.

    It probably can’t be done in time to influence the outcome of the pandemic’s first wave. But it could be done fairly quickly if congressional leaders and the White House require it by law. They should include funding for the project in the next COVID-19 rescue package.

    Over the past week, I’ve spoken or exchanged emails with a half-dozen experts in health information technology. Everyone says there are no technological roadblocks to making this happen.

    The federal government spent over $30 billion to help fund adoption of EHRs in over 90% of the nation’s hospitals, ambulatory surgical centers, outpatient clinics and physician offices. Recently enacted rules require software companies and providers to embrace an app economy to drive data exchange.

    There’s already an agreed-upon standard for exchanging information called Fast Healthcare Interoperability Resources, or FHIR, which the CMS promotes in its interoperability rule. There’s no reason, given the current crisis, why the feds couldn’t pay providers to expedite the process of getting smart on FHIR and reporting the most important data points for COVID-19 control to a central HIE.

    The roadblocks are ideological. First and foremost are the concerns about privacy. However, the national emergency declaration allows the government to waive HIPAA, the nation’s stringent patient privacy-protection law.

    There’s no reason why a national HIE can’t be built with a strong firewall. The CMS protects each beneficiary’s medical claims. The IRS protects each individuals’ tax returns. Just ask the president.

    Some may suggest we can’t ask our clinician heroes on the front lines of the pandemic to spend precious time filling out forms. But the beauty of a FHIR-based system is that virtually all the fields required for COVID-19 cases can be prepopulated from the standard EHR. The extra fields for pandemic reporting can be filled in by nonclinical support staff.

    The experts offered timelines for project completion anywhere from one week to 18 months. The time to start is now.

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