University of California Health has created a unified data set to help researchers develop COVID-19 treatments.
According to a UC press statement, the University of California COVID Research Data Set, or UC CORDS, comprises more than 640 million data points drawn from electronic health record information, and allows researchers to quickly compare previous individuals’ treatments.
“With the scale of the pandemic, we need as many UC researchers as possible to work on treatment options. Having access to this diverse data set that is already integrated may contain insights into COVID-19 that they may not find elsewhere, and can make their work more efficient,” said Atul Butte, chief data scientist for University of California Health, in the statement.
“This type of dataset may provide a window into patterns they might not have otherwise been able to identify,” he added.
WHY IT MATTERS
UC Health’s six health systems – five of which are academic medical centers – range throughout much of the state and provide care to millions of patients per year.
“The geographic distribution of UC hospitals across California means the data pulls from a broad section of the state’s diverse population,” noted the press release accompanying the announcement of UC CORDS.
According to UC Health, CORDS follows the U.S. Department of Health and Human Services’ definition of a HIPAA Limited Data Set, stripping patients’ direct identifiers and that of their employers, relatives or household members.
UC CORDS, said the release, “simplifies the process a researcher would otherwise have to go through to have a critical mass of detailed clinical data and patient variables to make meaningful comparisons. Once the request is validated, researchers gain access to the systemwide data from UC Health’s five academic health centers.”
UC Health says that UC CORDS “harmonizes and pre-integrates” types of data, saving researchers time.
It also notes the importance of combating homogeneity in patient data, particularly considering COVID-19’s disproportionate impact on Black and Latino people.
“Inequities in health care can start as early as the research phase,” said Dr. Carrie L. Byington, UC Health executive vice president, in the statement.
40% of UC patients are uninsured or covered by Medi-Cal, which may complicate their access to treatment or push them to seek treatment later out of fears around medical expenses.
WHY IT MATTERS
A renewed spotlight has been shone on COVID-19 data aggregation – and the hurdles around it – this week after HHS directed hospitals to bypass the U.S. Centers for Disease Control and Prevention in their reporting.
Although HHS maintained that the change was made with the support of the CDC, public health experts still voiced concern about the potential for information politicization.
“This decision to remove the CDC from its primary function and opt toward creating a duplicative, private federal contractor will halt the flow of crucial information,” said American Psychological Association President Sandra J. Shullman in a statement.
For its part, UC Health says it’s also engaging in national efforts around data-driven COVID-19 treatment.
“These include the National Institute of Health’s ACT Network, through its National Center for Advancing Translational Sciences (NCATS), which is working to develop open access to de-identified electronic medical record data from a national network of leading academic health centers,” read the press statement.
Meanwhile, earlier this month, the Research Data Alliance published the final version of its RDA COVID-19 Recommendations and Guidelines. The report includes best practices regarding clinical data, omics practices, epidemiology and social sciences.
“While the research and data are abundant, multi-faceted, and globally produced, there is no universally adopted system or standard, for collecting, documenting, and disseminating COVID-19 research outputs,” pointed out RDA.
ON THE RECORD
“A significant benefit of UC CORDS is that it gives you insights into clinical practices in much closer to real-time and is representative of a broader patient population than any one organization would have on its own, which is critical for research during the pandemic,” said Jonathan Watanabe, associate director at the UC Irvine Susan and Henry Samueli College of Health Sciences.
“This kind of approach to aggregating and sharing data is what we need to create more accessible large, long-term data sets that help avoid a rush to conclusions based on questionable correlations and selection bias,” Watanabe continued.
Kat Jercich is senior editor of Healthcare IT News.
Healthcare IT News is a HIMSS Media publication.