UC San Diego Health is one of a dozen health systems worldwide that have formed a research consortium for
doctors, researchers, patients and the general public to submit questions that could be answered by COVID-19 patient medical record data from 200-plus hospitals.
The consortium, called Reliable Response Data Discovery, is led by Dr. Lucila Ohno-Machado, chairwoman of the Department of Biomedical Informatics at UCSD Health, according to a news release. The consortium comprises 12 health systems with 202 hospitals to date, including UCLA, USC, UC Irvine, Cedars Sinai Medical Center and the Veterans Affairs Healthcare System.
“No single hospital alone has treated enough patients with COVID-19 to be able to see reliable patterns emerge and use that information to guide the direction of new studies,” Ohno-Machado said.
As the pandemic continues, there remains a need to determine who is at greatest risk of severe disease to better understand how the disease and treatments evolve and predict the need for resources.
To provide information about what patients have experienced and what factors are associated with different patient outcomes, the research consortium will provide answers through a new web portal, COVID19questions.org.
Users can submit questions about adults hospitalized with COVID-19, then consortium team members will evaluate the submissions for clinical usefulness and the likelihood that available data can provide answers. Questions are then translated into a computer code that queries a variety of electronic medical records in a way that will deliver results in an “apples to apples” comparison, Ohno-Machado said. Each health system runs the code on its own patient records and provides the results to the consortium.
When sufficient results accrue enough to be statistically meaningful, the answers are posted to the website, not as definitive conclusions but as data in the form of charts or other graphics, which researchers can further pursue.
According to UCSD, no patient-level data will be transmitted outside of each health system, only data aggregates, and the privacy of individuals and institutions will be preserved.
The site can draw from data on more than 45 million patients, including more than 59,000 who tested positive for COVID-19 and 29,000 who were hospitalized with the infection. To position the data to best reflect U.S. demographics, the consortium made a point of diversifying the patient population by including not only academic health systems in wealthy metropolitan areas but also small community hospitals, “safety net” hospitals and the VA.
As additional health systems around the world join the consortium, the data available will become more diverse and robust and the team will be able to answer more questions more efficiently, Ohno-Machado said.
“The scientific community has talked about using electronic medical records for guiding research and for answering relevant questions for a long time,” she said. “But until now we haven’t been doing it in a way that the public can see. This is much different than when only scientists can ask questions and publish their findings in academic journals.” ◆
