The National Institutes of Health (NIH) has extended its relationship with Regenstrief Institute as the Linkage Honest Broker (LHB) for the National COVID-19 Cohort Collaborative (N3C). The N3C is a national effort to gather medical record data to help scientists understand COVID-19. Under the expanded two-year partnership, Regenstrief will continue in its role as the Linkage Honest Broker which may include contributions to more national data efforts.
Together with partners Datavant and Indiana Clinical and Translational Sciences Institute (CTSI), Regenstrief has developed a way to securely link data from different sources without any patient-identifying information. This privacy-preserving record linkage protects patients’ identities while still allowing the collaborative to create robust datasets that comply with HIPAA standards. These datasets containing medical records from across the country are used by researchers to answer questions related to COVID-19, its impact and its treatment and prevention.
“We believe that privacy-preserving record linkage can dramatically improve advanced research uses of clinical data to produce real-world evidence in response to health and healthcare needs,” said N3C Linkage Honest Broker Director Umberto Tachinardi, M.D., MSc, chief information officer for Regenstrief Institute and director of informatics for Indiana CTSI. “We continue to build upon this technology and infrastructure to constantly evaluate and help produce fair and non-biased data to support equitable research.”
“We at Regenstrief are proud of our contributions to this important effort and look forward to continuing this important work with the NIH,” said Regenstrief President and Chief Executive Officer Peter Embí, M.D., M.S. “We are confident this partnership will help to improve the way large-scale clinical research is conducted in the future.”
As the Linkage Honest Broker for N3C, Regenstrief has been augmenting N3C data by integrating mortality information, virus variants and radiology images. In the near future, Center for Medicare and Medicaid Services claims could also be incorporated.
The new contract between Regenstrief and NIH, initially worth more than $2.3 million over the first year, allows for expansion of the data linkage based on future needs of the NIH and the National Center for Advancing Translational Sciences, 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. An additional section of the agreement could increase the funding up to its pre-approved ceiling of $15 million for the first two years.
In addition to Dr. Tachinardi and Dr. Embí, Shaun Grannis, M.D., M.S., Regenstrief vice president for data and analytics and professor at Indiana University School of Medicine, is the scientific director and the domain expert for patient matching as well as the architect and leader for privacy-preserving record linkage evaluation, a critical component of the LHB technology.
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 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.
About Indiana CTSI
The Indiana Clinical and Translational Sciences Institute (CTSI) is a statewide institute supported by a Clinical and Translational Science Award from the National Institutes of Health’s (NIH) and the National Center for Advancing Translational Science.
Indiana CTSI has research partnerships with Indiana University, Purdue University, and the University of Notre Dame which also includes life sciences, businesses and community organizations. Furthermore, Indiana CTSI engages with the public at every level of research from basic science to patient care.
Datavant’s mission is to connect the world’s health data to improve patient outcomes. Datavant works to reduce the friction of data sharing across the healthcare industry by building technology that protects the privacy of patients while supporting the linkage of de-identified patient records across datasets. Datavant is headquartered in San Francisco. Learn more about Datavant at www.datavant.com.
About Peter Embí, M.D., M.S.
In addition to serving as the president and CEO of Regenstrief Institute, Peter Embí, M.D., M.S. is the Leonard Betley Professor of Medicine and associate dean for informatics and health services research at Indiana University School of Medicine, associate director of informatics with Indiana Clinical and Translational Sciences Institute and vice president for Learning Health Systems with Indiana University Health.
About Umberto Tachinardi, M.D., MSc
In addition to being the chief information officer at Regenstrief Institute, Umberto Tachinardi, M.D., MSc, is the director of informatics for Indiana Clinical and Translational Sciences Institute. He is also the assistant dean for clinical informatics and a professor of biostatistics and health data sciences at Indiana University School of Medicine.
About Shaun Grannis, M.D., M.S.
In addition to his role as the vice president of data and analytics at Regenstrief Institute, Shaun Grannis, M.D., M.S., is the Regenstrief Chair in Medical Informatics and a professor of family medicine at Indiana University School of Medicine.