If you are diagnosed at Lee Health in Fort Meyers, Florida, with COVID-19 symptoms, you’ll be given a blood thinner as part of the standard treatment protocol. That’s because Lee’s physicians used the data in their Epic healthcare software to verify early reports linking COVID-19 to blood clots.
Their analysis showed that otherwise healthy patients with the virus are three times more likely to develop fatal clots.
Lee Health’s experience shows how observational data help scientists discover new connections that can prove critical to advancing patient care.
Observational data allow you to look at a specific variable, such as “COVID-19 positive,” and determine quickly whether there is a link to a specific clinical condition, such as developing a blood clot. It also helps get lifesaving guidance into the hands of doctors and nurses quickly.
The gold standard for clinical evidence is the peer-reviewed, randomized controlled trial, but that process can often take years. While this approach is necessary for novel treatments and vaccines, we can’t wait years to learn more about COVID-19.
To better treat people in this pandemic, we need to learn everything we can about the virus as quickly as possible. Observational data provide clues that can save lives today and help researchers understand where to focus for tomorrow’s peer-reviewed studies.
In May, the Epic Health Research Network, or EHRN, was launched in an effort to make observational data available to all physicians and researchers. EHRN is a collaborative journal for the 21st century using observational data from participating healthcare organizations. It’s a platform to share novel discoveries from a large patient population, and it is open to any healthcare organization or researcher to submit their observations or collaborate on future possible studies or treatments.
EHRN also offers insights and ideas Epic researchers have observed based on de-identified patient data that Epic customers have collected over decades.
Today, data from more than 50 million people are helping drive insights shared through EHRN, and we expect that number to grow to 200 million.
With Epic customers’ permission, EHRN is investigating how patients have been affected by the COVID-19 pandemic.
In one case, EHRN published age-related mortality rates of COVID-19 patients who received invasive mechanical ventilation. In another, it found that as people sheltered in place, fewer of them were able to keep up with preventive screenings and appointments. As a result, the number of routine cancer screenings decreased by 84% to 96%
In response, Epic has plans in place to work with healthcare organizations to better understand how these decreased screenings might affect future cancer rates in our country.
EHRN is not alone. Preprint platforms such as Dr. John Inglis’ bioRxiv and medRxiv do something similar. They are designed to promote the rapid sharing of knowledge to respond quickly to emerging health crises, like COVID-19.
As noted in a recent study posted to medRxiv, “There is a paucity of data that can be used to guide the management of critically ill patients with coronavirus disease 2019 (COVID-19). Global collaboration offers the best chance of obtaining these data, at scale and in time. In the absence of effective therapies, insights derived from real-time observational data will be a crucial means of improving outcomes.”
We know there are many questions that health experts, policy makers, and individuals need answers to as we all battle COVID-19.
As one of the nation’s largest healthcare records companies, Epic takes its responsibility to help discover and share new information seriously. We encourage you to visit EHRN and send our observational data team your questions.
Together, we can uncover new insights about the virus and ultimately save lives.
Judith R. Faulkner is founder and CEO of Epic.
John Toussaint, M.D., is executive chairman of Catalysis, a nonprofit education institute, CEO emeritus of ThedaCare and a member of Epic’s board of directors.