The COVID-19 Research Database, a pro-bono, cross-industry collaborative composed of institutions donating technology services, healthcare expertise, and de-identified data, announced recently that it has over 1,500 researchers registered and over 100 studies underway.
The database is a public-private consortium organized by Change Healthcare, Datavant, Health Care Cost Institute (HCCI), Medidata, Mirador Analytics, Snowflake, Veradigm, and others.
"In a crisis situation in which the country finds itself without a system for collecting, pooling, and linking data, this effort within the private sector is a game changer and a model for future efforts to solve national clinical and public health challenges," said Dr. Mark Cullen, professor of medicine at Stanford and chair of the Scientific Steering Committee.
Researchers from more than 350 different institutions have registered, including all the country's 30 top medical schools, the Centers for Disease Control and Prevention, the U.S. Food and Drug Administration, and the National Institutes of Health.
Research groups are working on studies ranging from optimal policy responses to the pandemic to how the pandemic has changed the provision of non-COVID-19 related services.
"The type of near-real-time, high-frequency, and comprehensive data that researchers can access through the COVID-19 Research Database is unprecedented," said Dr. Kosali Simon, a Herman B. Wells endowed professor in health economics at the O'Neill School of Public and Environmental Affairs at Indiana University. "It's enabling research that would otherwise have taken years to complete, to guide policy and practitioner decisions that needed to be made yesterday."
In addition, the database effort has identified and implemented new ways to better utilize real-world data, which will continue to be valuable post-pandemic and in studying other diseases.
The database effort has introduced an innovative new data solution allowing many datasets to be joined together without compromising patient privacy. This will create longer and richer longitudinal histories, which enable researchers to better understand the impacts of the current pandemic and the long-term impacts on patients' health.
Mirador Analytics provided the expert determination services for the creation of the data solution along with Medidata, which built the data architecture and provisioned environment to enable researchers to access the database. The HCCI will continue to manage the researcher application process and data governance for the effort.
"The utilized privacy approach – and the next phase of linking many datasets concurrently – is enabling timely access to real-world information in a manner that is both privacy preserving and focused on extracting maximal utility from the information. While maximal utility and privacy preservation are often at odds, the expert certification and controlled analytics environment have demonstrated this is possible for real-world information," said Jamie Blackport, chief executive officer of Mirador Analytics.
A number of the initiative's leaders and participants expressed the importance of the effort and the unprecedented nature in which it has come together:
"The pandemic has pushed nearly every individual and the management of their health into unknown territory. Being a part of this initiative proves that real-world data can be the glue that connects researchers to insights and ultimately solutions during uncharted times. The power of data for good is undeniable when it is connected to other data points and managed in a safe way that protects individual patient data," said Dave Kelly, chief executive officer at AnalyticsIQ.
"The COVID-19 Research Database is public-private, cross-industry collaboration at its best. The de-identified data provided by the consortium is vastly improving the granularity and timeliness of available epidemiological information for the pandemic and promises to be a game-changer in our ability to carry out informed and targeted public health decision-making," said Dr. Shweta Bansal, associate professor of biology at Georgetown University.
"In the race to mitigate the pandemic's impact, the COVID-19 Research Database has and continues to provide a unique, unmatched and no cost opportunity for the global COVID-19 research community. The extraordinary initiative enables researchers to not only access some of the most comprehensive and current COVID-19 real world data but also unleash the true and insightful power of this data through world-class analytics and artificial intelligence. The assembled team of global leaders from across the academic, government, healthcare, and technology sectors continues to grow and is reflective of the "one team" approach needed to end this pandemic," said Gail Stephens, vice president of SAS Healthcare and Life Sciences.
Researchers are welcome to register to request access to the COVID-19 Research Database Knowledge Base and the ability to submit research proposals. Access can only be granted if research is intended for non-commercial, non-financial, non-legal-related purposes.