Regenstrief Institute, Indiana Clinical and Translational Sciences Institute (CTSI), the National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH) and Datavant have been honored with a 2022 FedHealthIT Innovation Award for the National COVID Cohort Collaborative (N3C) Privacy Preserving Record Linkage (PPRL).
Regenstrief, Indiana CTSI and Datavant are supporting NCATS in the national effort to safely and securely gather data to help scientists develop insights and treatments for COVID-19. N3C PPRL addresses the significant challenges of assembling comprehensive patient records in large-scale clinical research due to care discontinuity and data fragmentation. De-identified data is being collected from participating healthcare systems and stored in a secure enclave.
“We are excited to be a part of an outstanding team advancing the state-of-the-art in PPRL processes to securely integrate data and accelerate COVID-19 discovery,” said Shaun Grannis, M.D., M.S., Regenstrief vice president for data and analytics and a professor at Indiana University School of Medicine. Dr. Grannis is the scientific director and the domain expert for patient matching, a critical component of Linkage Honest Broker governance.
The Regenstrief, Indiana CTSI and Datavant collaboration developed processes to securely link data from different sources without patient-identifying information. PPRL protects patients’ identities while allowing the collaborative to create robust datasets that comply with HIPAA standards, while also supporting researchers seeking to answer questions related to COVID-19, its impact and its treatment and prevention.
Dr. Grannis, Umberto Tachinardi, M.D., M.S., chief information officer for Regenstrief and director of informatics for Regenstrief and Indiana CTSI, and Peter Embí, M.D., M.S., formerly of Regenstrief, co-led the initiative. Dr. Tachinardi also is Regenstrief’s interim president and chief executive officer.
The award, presented by FedHealthIT, a national consolidated news source for information related to health agencies, “recognizes and honors the federal health technology and consulting community by celebrating programs nominated and selected by their peers for driving innovation and results across the Department of Veterans Affairs, the Military Health System, the Department of Health and Human Services, and the Centers for Medicare & Medicaid Services.”
The N3C is supported by NCATS. Other NIH support comes from the National Cancer Institute, the National Institute of Diabetes and Digestive and Kidney Diseases and the National Institute of General Medical Sciences. Indiana CTSI is part of the Clinical and Translational Science Awards (CTSA) Program, which, under NCATS’ leadership, supports a national network of medical research institutions — called hubs ― that work together to improve the translational research process to get more treatments to more patients more quickly.
The current contract between Regenstrief and NIH allows for expansion of the data linkage based on future needs of the National Institutes of Health and NCATS, which could include using the privacy-preserving record linkage to create databases for other conditions, developing advanced evaluation and assessment methods for the linkage, as well as operating a platform to coordinate with sites to sign up to contribute data for the Linkage Honest Broker privacy-preserving record linkage service.
About Shaun Grannis, M.D., M.S.
In addition to his role as vice president for data and analytics at Regenstrief Institute, Shaun Grannis, M.D., M.S., is the Regenstrief Professor of Medical Informatics and a professor of family medicine at Indiana University School of Medicine.
About Regenstrief Institute
Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. A key research partner to Indiana University, Regenstrief and its research scientists are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that inform practice and improve the lives of patients around the globe.
Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.
About the Indiana Clinical and Translational Sciences Institute
The Indiana Clinical and Translational Sciences Institute (CTSI) brings together the state’s brightest minds to solve Indiana’s most pressing health challenges through research. It is a statewide partnership among Indiana University, Purdue University, the University of Notre Dame and numerous life sciences businesses, government entities, and community organizations. The Indiana CTSI engages with the public at every level of research—from basic science to patient care. It has been continuously funded by multimillion-dollar grants from the National Institutes of Health since the Indiana CTSI’s founding in 2008 and is housed at the Indiana University School of Medicine. For more information, visit indianactsi.org.
About IU School of Medicine
IU School of Medicine is the largest medical school in the U.S. and is annually ranked among the top medical schools in the nation by U.S. News & World Report. The school offers high-quality medical education, access to leading medical research and rich campus life in nine Indiana cities, including rural and urban locations consistently recognized for livability.