Data Is Key to Containing COVID-19 and Preventing Next Pandemic
The COVID-19 pandemic elevated a crisis for the U.S.: we do not share the data and information needed to prevent death and suffering. Scientists, health workers and businesses possess the skills, passion, work ethic and ingenuity to meet serious challenges. However, the government has not implemented the data interoperability standards needed to empower private and public institutions.
Health data needs to be complete and continuous across time and geography to manage a serious health crisis like a pandemic – as well as underlying chronic diseases like hypertension, diabetes and depression. Legislation does exist to get better data including the HITECH Act (2009), Affordable Care Act (2010) and 21st Century Cures Act (2016). Yet years later, it is clear that is not enough.
The private market has shown that it will not produce unifying data standards and interoperation, and the government has failed to issue regulation giving business and health providers standards and incentives to create a unified data network. So today, patient medical records are often not transferable electronically to different sites of care. Often hospitals cannot even tell a primary care physician when their patient is admitted to the emergency room.
As a result, we saw Covid-19 coming later than we should have, and we cannot track hotspots and flare-ups. We have a patchwork of monitoring sites and health care professionals see different pieces of the pandemic, but nothing is effectively telling us where the virus is across the country, how lethal it is and to whom. This dearth of data-driven monitoring has put millions of people out of work with lost economic activity.
Imagine a different response to this pandemic -- with data interoperability across our health care system -- where we could see hospitalization spikes and idiosyncratic symptoms such as anosmia and fever earlier? What if hospitals could have easily shared information about drug and treatment regimens? Would we have noticed earlier the elevated mortality in people with cardiovascular disease and prevented the disproportionately bad impact in minority communities?
National, comprehensive and complete data would have enabled all of this to be a reality. Just consider how analysis of comprehensive data and real world evidence is currently used to contain infectious disease, tracking and containing flu trends that also inform vaccine production, and detecting hepatitis C. We may never know exactly which health threat will hit next, nor will we have enough tests initially, but we can know earlier what is coming, how deadly it is, who has been exposed and who needs the most protection.
Our country needs federal data interoperability regulations to develop a unified health care data network that is private and secure. Rules have yet to be created due to health care provider resistance to complex systems, vendors blocking information as a competitive tool, and privacy concerns. While the Cures Act and others intend to limit information blocking, they have been inadequate. The risks of data collection should not be minimized. However, we have now seen the reward side of the scale. Good data helps manage health – which accounts for 17% of U.S. GDP – it also manages the economy, which will continue to halt if containing infections means stay inside.
Standards should be set to ensure that health information is collected, shared, secured and complete. Financial incentives can be elevated with health providers and private health insurance companies that are reimbursed through programs like Medicare and Medicaid. Just as banks undergo financial liquidity “stress tests” to ensure their viability during future crises, health care providers should undergo “data liquidity” stress tests.
Failures sit with both Republican and Democrat administrations, and the $3.5 trillion health care industry. There is progress: in March the federal government published new rules to give patients more access to their data and issued an interoperability roadmap. It also relaxed rules requiring providers to comply with interoperability standards during the COVID-19 crisis. We need to prioritize establishing a national standard for data interoperability and put financial incentives and penalties in place for failing to capture health care data securely while protecting patient privacy.
Kirsten Axelsen is a visiting Fellow with the American Enterprise Institute, and a consultant to biopharma and data informatics companies.
Jason Grinstead is CEO of Metasense Analytics, which provides data interoperability solutions for health care organizations.
Michael O’Neil is founder & CEO of GetWellNetwork, a technology company that licenses patient engagement software to health care providers in pursuit of improved outcomes.
The authors are all Aspen Institute Health Innovators Fellows.