When the new coronavirus pandemic reached the United States in March, common symptoms like cough and shortness of breath were quickly identified. The health IT sector responded swiftly by creating terminology that would allow clinicians to document cases appropriately by integrating COVID-19 related terms into electronic health records (EHRs) across the country.

Now, over six months into the pandemic, reports show that a growing group of COVID-19 patients, many of whom were not hospitalized while they were symptomatic, are experiencing long-term side effects from the new coronavirus that aren’t well understood – leading to a lack of appropriate EHR documentation and, ultimately, incomplete data about the disease.

Some of these patients, often referred to as “long-haulers”, say that COVID-related symptoms like glaucoma, diabetes, and lupus are debilitating and unexpected. What’s more, without the right clinical terminology integrated into the EHR, they worry that valuable public health data about the disease is being lost.

It’s a complex problem, and it’s difficult to know exactly how to gather the information. What’s clear, though, is that there is still much that the scientific community doesn’t know about the disease. As we continue to learn more through medical research and the experiences of patients and physicians, health IT will continue to play an important role in data collection and disease management by making sure that the necessary terminology is available to those on the front lines.