Opening Up Mortality Data for Health Research
Authors: Sam Roosz, Michael Stebbins, and Horatio Thomas
Comprehensive and reliable mortality data is vital for public health research. Improving our infrastructure for managing these data will generate insights that promote longevity and healthy aging, as well as enable more effective response to rapidly evolving public health challenges like those posed by the COVID-19 pandemic. A modernized mortality data system will ultimately be self-sustaining through access fees, but will require federal investment to update state reporting infrastructure and data use agreements. The Biden-Harris administration should launch an effort to modernize our nation’s infrastructure for aggregating, managing, and providing research access to mortality data.
About the Authors
Sam Roosz is co-founder and CEO of Crescendo Health, a healthcare technology company focused on empowering patients to contribute their data to clinical trials. Most recently, Sam co-founded Datavant, the leading provider of de-identification and linking solutions for health data. He is currently launching a data-driven healthcare non-profit and planning his next venture. Sam received a degree in Molecular and Cellular Biology from Harvard and holds an MBA from the Stanford Graduate School of Business.
Michael Stebbins, Ph.D is a geneticist, and public policy expert who served as the Assistant Director for Biotechnology in the Obama White House Office of Science and Technology Policy. He is currently the President of Science Advisors, a science and health consulting firm he founded in 2018 to provide science, technology, and public policy guidance to private companies, philanthropies, and non-profit organizations. While at the White House, Dr. Stebbins' work led to large initiatives across the Federal government to address antibiotic resistance, protect pollinators, improve veterans’ mental health, increase access to federally funded scientific research publications and data, promote the preferential purchasing of antibiotic free meats, reform the regulatory system for biotechnology products, drive Federal purchasing of bio-based products, and improve the management of scientific collections. Dr. Stebbins previously served as the Vice President of Science and Technology for the Laura and John Arnold Foundation, science advisor to the Obama Presidential Campaign, and on the Obama White House Transition Team. He is the former director of biology policy for the Federation of American Scientists and worked for U.S. Senator Harry Reid and at the National Human Genome Research Institute. Before coming to Washington, he was a senior editor at Nature Genetics.
Horatio Thomas, M.D., M.M.Sc. is a resident physician in the Department of Radiation Oncology at the University of California, San Francisco (UCSF). He completed his undergraduate and medical school training at Harvard University. His academic interests include medical education and clinical and translational outcomes in oncology. With regards to medical education, his research explores personal and professional factors that affect residents’ professional pursuits, resource-efficiency in residence, and the element of training programs that shape residents’ professional development. In oncology, he investigates social, clinical, pathological, and molecular features of patients with malignancy that correlate with their clinical outcomes. He continues to build on this research with emphasis on how current clinical practices affect the health of underserved populations based on socioeconomic status, race, sexual orientation, and/or gender identity.