Long COVID is a perfect example of the need for greater interoperability
"The pandemic is over." That's President Biden's belief, though neither the World Health Organization nor the U.S. Department of Health and Human Services has declared an end to the COVID-19 emergency. We are certainly in an interesting period where much of the general public has moved on yet public health officials are (rightfully) concerned about new variants, surges, and the hundreds of Americans dying from COVID each day.
What is definitely not over, however, is the battle against post-COVID conditions, better known as "Long COVID." Long COVID sufferers (sometimes called "long-haulers") have faced persistent symptoms—at times debilitating ones—since their infections, and sadly we haven't figured out what causes it or how to best prevent and treat it. The exact scope of Long COVID isn't even clear, though by some estimates, it is having a significant impact on the job market and patients' ability to work.
This is a perfect example of how interoperability could make an enormous difference in people's lives. Interconnected systems could help us better track and analyze who has Long COVID, what their infection was like, which treatments have been tried and which ones have proven effective. But the fragmentation of our healthcare technology ecosystem means information lives in silos, and silos don't breed success. Solving the Long COVID puzzle requires an acceleration in interoperability; millions living with the condition deserve nothing less.
Bearing a great burden
We don't truly know how many people are living with Long COVID, but it's likely a large number. The National Bureau of Economic Research published a paper this month calculating that half a million Americans have been pushed out of the labor market due to COVID. The Brookings Institution went even higher, estimating as many as four million people could be out of work due to Long COVID, at a cost of up to $230 billion in annual lost wages. Both reports measure only working-age Americans, so they surely undercount the true prevalence.
Relief for the millions of long-haulers is also lacking. The National Institutes of Health and the Centers for Disease Control and Prevention are coordinating studies on COVID's long-term effects, and HHS produced a report last month outlining the various resources available to individuals with Long COVID. Yet the answer to the fundamental question of "Why did I develop Long COVID and how can I treat it" remains elusive. Several large health systems have established Long COVID clinics to provide focused treatment, but doctors are forced to fit in patients as they can and to rely on informal networks for sharing best practices. From the patient's perspective, they must endure extra appointments and shuttling between primary care and specialty providers—that is, if they even have easy access to help.
Stitching together a solution
It doesn't have to be this way. Imagine a world where providers can easily flag patients with Long COVID and add them to a regional or national registry. Patients could meet with providers through telehealth visits, complete assessments on a mobile device, and automatically report vitals through remote patient monitoring services, all of which improve accessibility for low-income and rural patients. Providers who take on new Long COVID referrals could receive medical records electronically, relieving long-haulers of the strain of repeatedly recounting their ordeals. And researchers could pull together aggregate data on Long COVID to identify trends and promising treatment options using metrics, rather than guesswork or anecdotes.
Nothing I've described is outside the realm of possibility—in fact, from a technology perspective, we have all of these capabilities already. But we lack the interoperability network to stitch it all together. It's as if we have dozens of pieces of fabric but we're still well short of a quilt. For us to truly make headway with Long COVID, we need to make it easy to identify and track cases, gather discrete and narrative data, and exchange this data with the organizations and people who can use it to better long-haulers' lives. Without improved interoperability, providers and patients are left to fend for themselves, and the costs associated with treating Long COVID balloon due to inefficiency and duplication. With greater interoperability, we can harness data to return power to those who have suffered for too long.
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Illustration by Fusion Medical Animation on Unsplash
