The outbreak of coronavirus has brought suffering and death on a global scale not seen in our lifetimes. As of April 9, there were more than 400,000 confirmed cases and 15,000 deaths. The U.S. health care system is straining under a deluge of COVID-19 patients with hospitals in particular bearing the brunt of a massive patient surge, many of whom are needing advanced care such as ICU beds and ventilators in order to treat serious respiratory issues.
In this time however, there is a dearth of standardized, actionable information to help us better understand COVID-19 impact and progression in the United States. Traditional data sources such as the Centers for Disease Control and Prevention’s (CDC) Morbidity and Mortality Weekly Report are missing or have incomplete data on serious underlying health conditions, hospitalization status, ICU admission, death, and age and the CDC does not report any data stratified by race and ethnicity. This lack of data is especially problematic given the way COVID-19 progression and severity is highly influenced by age and prevalence of comorbidities. Data on race is needed because COVID-19 is exacerbating racial disparities, as seen in the disproportionate impact on Black Americans.
In order to address some of these gaps in data, the Robert Wood Johnson Foundation’s Health Data for Action program, managed by AcademyHealth, is supporting a collaboration between Health Care Cost Institute (HCCI), CareJourney, the Berkeley Research Group, and a sentinel network of geographically diverse health systems to create an open COVID-19 patient data registry network. The network will include a series of standardized data extracts and queries that will allow researchers, clinicians, policy makers, and journalists to better understand the impact and progression of COVID-19. Each participating site has committed to the following key steps:
- Using their Electronic Health Record systems, develop an internal COVID patient data registry, mapped to a standardized open data model (ie., OMOP, PCORnet, i2b2);
- Developing a list of standardized research questions, which will be answered via a distributed query process managed by HCCI. The results of these queries will be combined by HCCI into at least one de-identified COVID Public Use File, which will be available for use by researchers, journalists, and other interested parties;
- Where feasible, sharing best practices, tools, and additional technical resources, including efforts that build on recent federal regulations such as use of "bulk" FHIR that can scale across other initiatives.
The following partners are currently committed to participate in this initiative:
- Rush University Medical Center
- Prisma Health
- HealthShare Exchange / Jefferson Health
We anticipate adding more partners in the days ahead. Our aspiration is to open up as much of our learnings on governance best practices, standards development and use, tooling and other matters that might offer a reference model for the many other COVID-related data initiatives, and beyond.
If you are interested in participating or receiving more information about this initiative, please email firstname.lastname@example.org.