University of California San Diego Health is one of a dozen health systems worldwide which 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, it was announced Thursday.
As the pandemic continues, there remains a need to determine who is at greatest risk for 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.
The consortium, called Reliable Response Data Discovery is led by Dr. Lucila Ohno-Machado, chair of the Department of Biomedical Informatics at UCSD Health. The consortium comprises 12 health systems with 202 hospitals to date, including UCLA, USC, Cedars Sinai Medical Center, Ludwig Maximilian University of Munich, University of Colorado Anschutz Medical Campus and the Veterans Affairs Healthcare System, among others.
“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.
The COVID-19 Questions site allows health systems to maintain control of their own data rather than pool it in a central repository. According to UCSD, no patient-level data will ever be transmitted outside of each health system, only data aggregates, and the privacy of individuals and institutions is preserved.
Users can submit questions about adults hospitalized with COVID-19, then consortium team members 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 reproducible results in an “apples to apples” comparison, Ohno-Machado said. Each health system runs the code on their own patient records and provides the results to the consortium.
When sufficient results accrue enough to be statistically meaningful, the answers are posted back to the website, not as definitive conclusions, but as data in the form of charts or other graphics, which researchers can further pursue.
Some of the questions already asked and answered include:
— Among adults hospitalized with COVID-19 and a history of hypertension, what is the mortality rate for those who received anti- hypertensive medications?
— Many adult COVID-19 patients who were hospitalized did not get admitted to the intensive care unit and were discharged alive. Of those, how many returned to the hospital within a week?
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, Ohno-Machado said the data available will become more diverse and robust, and the team will be able to answer more questions, more efficiently.
“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.”
–City News Service