SAN FRANCISCO, Oct. 1, 2020 /PRNewswire/ -- The COVID-19 Research Database, a pro-bono initiative led by numerous leading healthcare organizations, including Change Healthcare, Datavant, the Health Care Cost Institute (HCCI), Healthjump, Medidata (a Dassault Systèmes company), Mirador Analytics, Office Ally, SAS, StataCorp, Snowflake, Symphony Health, and Veradigm, today announced that it has over 1,500 researchers registered and over 100 studies underway.
"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 of 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.
Sample publications have investigated:
- The effects of state closure policy on the utilization of non-COVID-19 healthcare services (paper here)
- The disparity in infection rates between Black and Hispanic patients compared to white, non-Hispanic patients (findings here)
- How to balance economic and public health concerns in pursuing reopening policies (findings here)
- The fluctuations in expected mortality driven by the pandemic (findings here)
- How mortality rates and infection rates have varied by socioeconomic group (findings here)
- The impact of COVID-19 on the use of preventative care (findings here)
- Variations in the cost of COVID-19 testing across different geographies (findings here)
"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, the 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, for guiding 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 data sets 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 for patients' health. Mirador Analytics provided the expert determination services for the creation of the data solution along with Medidata, a Dassault Systemes company, which built the data architecture and provisioned environment to enable researchers to access the database. The Health Care Cost Institute will continue to manage the researcher application process and data governance for the effort.
Organizations participating in the COVID-19 Research Database include AnalyticsIQ, Arcadia.io, Berkeley Research Group, Change Healthcare, Datavant, Elsevier, Eurofins Viracor, Glooko, Health Care Cost Institute, Healthjump, HealthWise Data, Helix, Medidata, a Dassault Systemes company, Mirador Analytics, Munich Re Life US, Office Ally, Ovation, Panalgo, Parexel, PointClickCare, Prognos Health, QIAGEN, SAS, Snowflake, StataCorp, Sumitomo Dainippon Pharma, Symphony Health, Veradigm, and Verana Health.
"Real-world data has the power to dramatically accelerate our ability to understand and respond to the COVID-19 pandemic," said Travis May, Chief Executive Officer at Datavant. "The research results from the database so far have demonstrated the power of real-world data, and we are excited to continue to see how the database can enable the healthcare community to better respond to today's largest public health crisis."
A number of the initiative's leaders and participants also expressed the importance of the effort and the unprecedented nature in which it has come together:
"The COVID-19 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." — 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." — Dr. Shweta Bansal, Associate Professor of Biology at Georgetown University
"We are delighted to help our country's leading medical data scientists understand COVID-19 disease progression, the effectiveness of various interventions and impacts to the healthcare system overall. The governance underpinning COVID-19 Research Database ensures the most important questions are answered responsibly and with scientific integrity." — Tim Suther, Senior Vice President & General Manager, Data Solutions, of Change Healthcare
"At Healthjump we are very pleased with the results of the COVID-19 Research Database: actionable research has been achieved, with more coming, in extraordinarily short time frames, demonstrating the value of data liquidity, common state of the art infrastructure and native safeguards." — Martin Aboitiz, CEO of Healthjump
"The COVID-19 Research Database has generated unprecedented reach in less than 6 months. To go from proof of concept to more than 100 teams actively conducting research on such a wide range of issues is truly remarkable." — Niall Brennan, President and CEO of the Health Care Cost Institute
"Through this research and engagement with the research community, we are witnessing the early impact of being able to bridge different real world data sources together to better understand the costs, treatments and outcomes associated with COVID-19. We are hopeful that the continuous growth and use of this important research database will fuel research and our understanding of this complex disease for years to come." — Arnaub Chatterjee, Senior Vice President of Product at Acorn AI, the data sciences entity of Medidata Solutions
"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." — Jamie Blackport, CEO of Mirador Analytics
"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 these 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." — Gail Stephens, Vice President of SAS Healthcare & Life Sciences
"The COVID-19 Research Database is already making a difference. Access to the data associated with the pandemic and tools to analyze that data have never been made so accessible in this type of environment before. The ability of such a diverse group of organizations to quickly collaborate is making a real impact in the understanding of COVID-19." — Yulia Marchenko, Vice President, Statistics and Data Science at StataCorp
"The analyses generated and published from the COVID-19 registry data bring more awareness to real world evidence (RWE) and creates a call to action for patients to voluntarily share healthcare data. This real world data has fueled COVID-19 research, but the true value of this data will be seen in the future as more patients understand the importance and impact that sharing their data can have to improve care and treatment for themselves and their loved ones." — Connie Inguanti, Vice President, Corporate Development & Strategic Partnerships of Symphony Health, a division of PRA Health Sciences
"It's the first time in my 20+ years of working in the industry where a large group of competitors and peers have united in this way to address an acute healthcare crisis. It's extremely gratifying for Veradigm to be part of this research partnership." — Stephanie Reisinger, VP and GM, Life Sciences of Veradigm Health