A consortium of healthcare companies have announced the launch of the COVID-19 Research Database, a secure repository of HIPAA-compliant, de-identified and limited patient-level data sets made available to public health and policy researchers to extract insights to help combat the COVID-19 pandemic.
The database is a pro bono, cross-industry collaboration. Collaborators include Advarra, Aetion, AnalyticsIQ, Arcadia.io, Berkeley Research Group, Boston Health Economics, Change Healthcare, Datavant, Elsevier, Glooko, Health Care Cost Institute, Healthjump, Helix, Medidata(a Dassault Systèmes company), Mirador Analytics, Munich Re Life US, Office Ally, Omny Health, Parexel, Prognos Health, QIAGEN, Snowflake, Sumitomo Dainippon Pharma, Symphony Health, and Veradigm.
Researchers and policymakers seeking to better understand the COVID-19 pandemic have faced challenges because data relevant for this research is hard to access, fragmented and limited in its ability to answer critical research questions. The COVID-19 Research Database contains HIPAA-compliant, de-identified and limited, longitudinal, patient-level data sets from a consortium of institutions and organizations. It comprises a large, diverse repository of real-world data, including medical claims, pharmacy claims, electronic health records, and demographic data. In addition to the underlying data, the repository integrates patient linking technology and statistical certification, connecting data sources in a HIPAA-compliant manner to provide a more complete view of the patient journey. Researchers can access the COVID-19 Research Database via an analytic platform, enabling them to conduct large-scale studies while protecting patient privacy.
Some examples of the types of assessments that can be conducted using the COVID-19 Research Database include evaluations of drug effectiveness utilizing de-identified electronic health record and claims data, identifying which demographic factors and pre-existing conditions are most closely correlated with ventilator support or excess mortality, and measuring the public health impact of quarantine measures put in place in different geographies.
Researchers interested in accessing the database can submit a proposal to the Scientific Steering Committee, chaired by Dr. Mark Cullen, the Founding Director of the Center for Population Health Sciences and a Professor of Medicine, Biomedical Data Science, and Health Research and Policy at Stanford University. Researchers whosesubmissions are accepted can then access the database at no cost. Research findings can be submitted to and made available through peer-reviewed publications.
“The first challenge that many researchers have run into with this crisis is the difficulty of accessing high-quality health data that can be used to answer pressing questions such as drug and non-drug treatment effects, factors that drive differential risk of catching the disease and very different outcomes in those who do,” said Dr. Mark Cullen, Professor of Medicine, Stanford University. “As a massive public-private collaboration, the COVID-19 Research Database offers researchers a solution and a chance to dramatically accelerate our understanding of this highly infectious virus.”
Additional members of the Scientific Steering Committee and Advisory Board include Dr. Don Berwick, President Emeritus and Senior Fellow, Institute for Healthcare Improvement; Niall Brennan, President and Chief Executive Officer of the Health Care Cost Institute; Dr. Abel Kho, Director, Institute for Public Health and Medicine, Northwestern Medicine; Deven McGraw, Chief Regulatory Officer, Ciitizen; Dr. Charles Safran, Chief, Division of Clinical Informatics at Harvard University; and Dr. David Shulkin, Former United States Secretary of Veterans Affairs.
“The COVID-19 pandemic has revealed many of the gaps in America’s healthcare infrastructure, one of which is the challenge of accessing and connecting relevant data to answer pressing research questions,” said Niall Brennan, President and Chief Executive Officer, Health Care Cost Institute. “The COVID-19 Research Database is focusing on getting the most valuable data to researchers as quickly as possible and represents one of the largest public-private repositories of real-world data ever assembled.”
"In a global pandemic, it’s all hands-on deck to fight the virus and tackle the barriers we face to overcome it. We have the data, and we have the technologies to connect it. We need to use these to have a positive impact in the fight against COVID-19 while maintaining and protecting the rights to privacy of individuals within the data,” said Jamie Blackport, Chief Executive Officer of Mirador Analytics.
“Understanding and treating COVID-19 is the challenge of our time,” said Travis May, Chief Executive Officer of Datavant. “It has been inspiring to work with the health data and scientific communities to rapidly assemble a high-quality database designed to allow researchers to build foundational knowledge about this highly infectious and destructive disease.”