Appendix C

Biographical Sketches of Workshop Speakers

LYNN BLEWETT is the director of the State Health Access Data Assistance Center (SHADAC), a research and policy center that supports state efforts to monitor and evaluate programs and reforms to increase access to needed health care. She is also a professor of health policy in the School of Public Health, University of Minnesota. Her research includes Medicaid payment reform, the evolving health care safety net, and measures to monitor population health outcomes. She brings expertise in state and federal health data resources, including federal surveys such as the Current Population Survey, the American Community Survey, the National Health Interview Survey (NHIS), and the Behavior Risk Factor Surveillance System, which are all accessible through SHADAC’s interactive online Data Center. She also heads up a project funded by the Robert Wood Johnson Foundation to provide expertise in the use of data analytics to inform and monitor implementation of the Patient Protection and Affordable Care Act and was instrumental in establishing the University of Minnesota-based Census Research Data Center, which focuses on health services research and policy. She is also principal investigator of the Integrated Health Interview Series, a project funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development to harmonize and integrate more than 50 years of the NHIS and make it accessible through a web portal for academic and policy research. She earned an M.A. degree in public affairs and a doctorate degree in health services research from the University of Minnesota.

ATUL BUTTE (NAM), M.D., Ph.D., is the Priscilla Chan and Mark Zuckerberg Distinguished Professor and inaugural director of the Bakar

Computational Health Sciences Institute at the University of California, San Francisco. He is also the chief data scientist for the entire University of California Health System, the 10th largest health system by revenue in the United States, with 20 health professional schools, six medical schools, six academic health centers, 10 hospitals, and more than 1,000 care delivery sites. He has been continually funded by the National Institutes of Health for 20 years, is an inventor on 24 patents, and has authored more than 200 publications. His research has repeatedly been featured as well in the New York Times, Wall Street Journal, and Wired Magazine. He was elected into the National Academy of Medicine in 2015, and in 2013 he was recognized by the Obama Administration as a White House Champion of Change in Open Science for promoting science through publicly available data. Butte is also a founder of three investor-backed data-driven companies: Personalis (IPO, 2019), which provides medical genome sequencing services; Carmenta (acquired by Progenity in 2015), which discovered diagnostics for pregnancy complications; and NuMedii, which finds new uses for drugs through open molecular data. He trained in computer science at Brown University, worked as a software engineer at Apple and Microsoft, received his medical degree at Brown University, trained in pediatrics and pediatric endocrinology at Children’s Hospital Boston, and then received his Ph.D. from Harvard Medical School and the Massachusetts Institute of Technology.

RUTH CARLOS is a professor of radiology and serves as the assistant chair for clinical research at the University of Michigan. Her work encompasses cost-effectiveness analysis, patient preference measurement, and meta-analysis and systematic reviews in diagnostic imaging. Her research also seeks to understand the effectiveness of maternally directed interventions to improve vaccine uptake in adolescent daughters. She brings her specific expertise in evaluating cultural barriers to adolescent HPV vaccination in African-American mothers and developing and pilot-testing tailored interventions directed at these cultural barriers. She also co-directs the Program on Women’s Health Care Effectiveness Research in the Department of Obstetrics and Gynecology at the University of Michigan Medical School and currently chairs the GE Association of University Radiologists Research Radiology Academic Fellowship, a national program supporting early-stage investigators in health services research and care delivery. She received her medical degree from and completed her diagnostic radiology residency at the University of Chicago, and did a fellowship at the University of Michigan in Ann Arbor, joining the faculty at the University of Michigan in 1998. She also holds a master’s degree from the School of Public Health at the University of Michigan.

ALISON CERNICH is the deputy director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). In

this role, she assists the NICHD director in overseeing the institute’s programs supporting research on child development, developmental biology, nutrition, HIV/AIDS, intellectual and developmental disabilities, population dynamics, reproductive biology, contraception, pregnancy, and medical rehabilitation. Prior to this position, she was the director of NICHD’s National Center for Medical Rehabilitation Research (NCMRR), where she managed a $72 million research portfolio aimed at improving the health and well-being of people with disabilities. As NCMRR director, she led the development and revision of the congressionally mandated National Institutes of Health Research Plan on Rehabilitation, an effort that included coordination with 17 institutes and centers and multiple external stakeholders. Before joining NICHD, she served as deputy director of the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury at the U.S. Department of Veterans Affairs (VA), where she coordinated prevention, education, research, and clinical care efforts for service members and veterans diagnosed with traumatic brain injury. Prior to her 10 years with the VA, she was the traumatic brain injury liaison to the Department of Defense, the chief of neuropsychology and director of the Polytrauma Support Clinic at the VA Maryland Health Care System, and a funded investigator through the VA Rehabilitation Research and Development Service. She received her doctoral degree in clinical psychology from Fairleigh Dickinson University and completed postdoctoral training in cognitive neuroscience at the National Rehabilitation Hospital in Washington, D.C.

LESLEY CURTIS is professor and chair of the Department of Population Health Sciences at the Duke University School of Medicine. A health services researcher by training, she is an expert in the use of Medicare claims data for health services and clinical outcomes research and a leader in national data quality efforts. She serves as co-principal investigator of the Food and Drug Administration’s (FDA’s) Sentinel Innovation Center, co-investigator of the Data Core for the FDA’s Sentinel Initiative to monitor the safety of FDA-regulated medical products, and chair of the Data Quality Subcommittee for the National Evaluation System for health Technology Coordinating Center, which generates real-world evidence for health technology and medical devices. She also serves as co-investigator of the coordinating center for the Patient-Centered Outcomes Research Institute’s National Clinical Research Network (PCORnet), working with health systems and patient networks to develop a harmonized network infrastructure that leverages health systems and electronic health records data for robust observational and interventional research. She received her Ph.D. from the University of Rochester.

LAURA ESSERMAN is a surgeon and breast cancer oncology specialist practicing at the University of California, San Francisco (UCSF) Breast Care

Center. She directs the UCSF Clinical Breast Cancer Program and co-leads the Breast Oncology Program. She is a professor of surgery and radiology at UCSF as well as a faculty member at the UCSF Helen Diller Family Comprehensive Cancer Center. Her research has focused on tailoring treatment to biology, which requires the integration of translational science, bioinformatics, medical and clinical informatics, systems integration, and clinical care delivery. She has led the I-SPY Trials, a collaboration among the National Cancer Institute, the Food and Drug Administration, more than 28 cancer research centers, major pharmaceutical and biotech companies, and the not-for-profit sponsor, Quantum Leap Healthcare Collaborative. Additionally, she led the creation of the University of California-wide Athena Breast Health Network, a learning system designed to integrate clinical care and research as it follows 150,000 women from screening through treatment and outcomes. As part of the network, she has spearheaded the development of the WISDOM study to learn how to improve breast cancer screening by examining the effectiveness of a personalized screening strategy informed by each woman’s breast cancer risk and preferences, in comparison with the standard of annual screening. She recently collaborated with her pulmonary and critical care colleagues to launch the I-SPY COVID-19 Trial, to rapidly screen agents to improve outcomes for critically ill COVID-19 patients. She earned her undergraduate degree at Harvard University and completed her medical and surgical training at Stanford University. She completed a postdoctoral fellowship in breast oncology at Stanford and later earned an M.A. degree from the Stanford Graduate School of Business.

PAT FURLONG is the founding president and chief executive officer of Parent Project Muscular Dystrophy, the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Its mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion. She is the mother of two sons who lost their battle with Duchenne in their teenage years. She has served on the boards of the Genetic Alliance and the Muscular Dystrophy Coordinating Committee of the U.S. Department of Health and Human Services. She has also served on the data safety monitoring board for both the Rare Diseases Clinical Research Network and the Cooperative International Neuromuscular Research Group. She was a member of the Institute of Medicine’s Committee on Accelerating Research and Development for Rare Diseases and Orphan Products. She graduated from Mt. St. Joseph College in Cincinnati, Ohio, with a B.S. in nursing, and attended graduate school at The Ohio State University.

TODD GILMER is professor and chief, Division of Health Policy, in the School of Public Health at the University of California, San Diego. His

research has focused on four areas: health insurance, risk adjustment in Medicaid, cost-effectiveness of diabetes care, and mental health services. He specializes in research design and data analysis; the use of large datasets including those from Medicare, Medicaid, and commercial health plans, national surveys and census data; mixed methods that combine analysis of health insurance claims with qualitative interviews and focus groups; and the evaluation of community-based interventions to improve the health of vulnerable populations. His recent work has examined the comparative effectiveness of supporting housing programs for persons with serious mental illness who are homeless and the importance of the fidelity of these programs to the Housing First model of permanent supported housing; the effectiveness of behavioral health integration and complex care management in Medicaid managed care; the use of peer providers in mental health programs designed for transitional-age youth; and service use after first episode of psychosis. He leads teams of health services researchers to provide data analysis and performance monitoring for San Diego County Behavioral Health Services and in studying innovative service delivery models in San Diego and Los Angeles counties. He received his Ph.D. in economics from the University of Washington.

ADI GUNDLAPALLI is the chief public health informatics officer of the Center for Surveillance, Epidemiology, and Laboratory Services at the Centers for Disease Control and Prevention (CDC). In this role, he leads an interdisciplinary team to meet the evolving data and information needs of public health, thereby enhancing informatics capability. Prior to coming to the CDC, he was the chief health informatics officer for the Salt Lake City Veterans Affairs Health Care System and an infectious diseases staff physician in Utah. He was a tenured professor of internal medicine at the University of Utah School of Medicine and a physician at the University of Utah Hospitals and Clinics. He is board certified in internal medicine, infectious diseases, and clinical informatics. His clinical and research interests include infectious diseases, clinical immunology, bio-surveillance (and biodefense), preparedness for public health emergencies, infection prevention and hospital epidemiology, and health care for vulnerable populations. He received his medical degree from the Madras Medical College in Madras (now called Chennai), India. He received further training at the University of Connecticut Health Center, where he earned a Ph.D. in immunology and completed an internal medicine residency. In Utah he completed a 3-year clinical and research fellowship in infectious diseases at the University of Utah School of Medicine and an M.A. degree (with a thesis) in biomedical informatics.

JACOB KEAN is a research scientist with the Department of Veterans Affairs (VA) Informatics and Computing Infrastructure of the Salt Lake City

VA Health Care System and an associate professor in health system innovation and research in the Department of Population Health Sciences at the University of Utah. He was previously a research scientist at the Regenstrief Institute and on the faculty at Indiana University School of Medicine. Kean served as a visiting scientist at the Boston University Rehabilitation Outcomes Center, a visiting scholar at the Center for Rehabilitation Research Using Large Datasets at the University of Texas Medical Branch, and a VA Career Development Awardee. His expertise lies at the nexus of the creation and operation of research networks and the evaluation of network care practices using patient-centered outcomes. He is the director of the Population Health Science–U Health Learning Health System; principal investigator (PI) of the Cerebral Palsy Research Network Data Coordinating Center; PI of the Department of Defense-funded Optimizing Rehabilitation InterventiONs (ORION) for Cognition Following Complex Traumatic Brain Injury network; and co-PI of the VA-funded Brain Injury Data Sharing Project—all of which are electronic health records–based learning health systems focused primarily on the care of persons with acquired neurological disorders. He has a Ph.D. from Indiana University Bloomington in speech and hearing sciences. He also completed the National Institutes of Health Training Institute for Dissemination and Implementation Research in Health and a post-doctoral master’s degree in measurement, evaluation, statistics, and assessment at the University of Illinois–Chicago.

MEAGAN KHAU is the director of the Data and Policy Analytics Group (DPAG) at the Centers for Medicare & Medicaid Services (CMS) Office of Minority Health (OMH). DPAG conducts research, data collection, and analyses to identify targets to reduce health disparities and improve quality of care, care transitions, access to care, and beneficiary satisfaction for vulnerable populations. DPAG is also involved in developing and implementing initiatives and data analyses to support cross-component/cross-agency collaborations to improve data collection, analysis, and reporting of race and ethnicity, primary language, disability, gender, and other characteristics associated with health disparities. Prior to joining CMS OMH, she was the deputy director of the Division of Pharmacy at the Center for Medicaid and Children’s Health Insurance Program Services, managing the operations of the Medicaid Drug Rebate Program, supporting system developments, ensuring program compliance, and implementing new policies and regulations. She received her master’s degree in health administration from the University of Southern California and her B.A. in sociology from the University of California, Irvine.

JAMES LEWIS is a professor of medicine and epidemiology, a senior scholar at the Center for Clinical Epidemiology and Biostatistics, and an

associate director of the Inflammatory Bowel Disease (IBD) Program at the University of Pennsylvania’s Perelman School of Medicine in Philadelphia, Pennsylvania. He has been actively involved in clinical research related to IBDs, medication safety, and optimizing medical therapies for more than 20 years. More recently, he has focused on the impact of diet on the gut microbiome and the course of IBD. His work has been funded by the National Institutes of Health, the Department of Health and Human Services Agency for Healthcare Research and Quality, the Patient-Centered Outcomes Research Institute, the Centers for Disease Control and Prevention, and numerous foundations and corporate sponsors. He previously served as the chair of the National Scientific Advisory Committee and as a member of the National Board of the Crohn’s & Colitis Foundation. Lewis is currently the lead scientist for the Foundation’s IBD Plexus Research Collaborative and co-principal investigator of SPARC-IBD, a multicenter prospective cohort study of patients with inflammatory bowel disease. He received his M.D. and his M.S. in clinical pharmacoepidemiology from the University of Pennsylvania School of Medicine.

MARSHA LILLIE-BLANTON is associate research professor in the Milken Institute School of Public Health at George Washington University. She is a public health professional with more than 30 years of experience working on health and health care access issues facing vulnerable populations. Her professional career has woven together opportunities to pursue scholarship and teaching in academia with efforts as a practitioner grounded in the realities that confront marginalized communities. She previously served as the chief quality officer and director of the Division of Quality and Health Outcomes at the Center for Medicaid and Children’s Health Insurance Program (CHIP) Services at the Centers for Medicare & Medicaid Services (CMS). With a budget of $500 million over 6 years, she had responsibility for establishing a health care quality measurement and reporting program for Medicaid and CHIP, oversight of state contracts for annual external quality reviews of Medicaid managed care organizations, developing the state-federal partnership in quality improvement activities, and conducting the first-ever nationwide survey of Medicaid beneficiaries’ experiences of care. Prior to her position with CMS, she held senior-level positions with the Henry J. Kaiser Family Foundation and the U.S. Government Accountability Office. She holds a bachelor’s degree from Howard University and a master of health science and doctorate degrees from the Johns Hopkins University Bloomberg School of Public Health.

VINCENT MOR (NAM) is the Florence Price Grant professor of community health at the Brown University School of Public Health and a research health scientist at the Providence Veterans Administration Medical Center.

He has been principal investigator of more than 40 National Institutes of Health (NIH)-funded grants focusing on the use of health services by and outcomes for frail and chronically ill people. He has evaluated the impact of programs and policies including Medicare funding of hospice, changes in Medicare nursing home payment, and the introduction of nursing home quality measures. He coauthored the congressionally mandated Minimum Data Set (MDS) and was architect of an integrated Medicare claims and clinical assessment data structure used for policy analysis, pharmacoepidemiology, and population outcome measurement. He developed summary measures using MDS data to characterize residents’ physical, cognitive, and psychosocial functioning. These data resources are the heart of Mor’s National Institute on Aging (NIA)–funded program project grant, Changing Long-Term Care in America, which examines the impact of Medicaid and Medicare policies on long-term care. These data are also at the core of a series of large, pragmatic cluster randomized trials of novel nursing home-based interventions led by Mor. He received a MERIT award from NIA at NIH, a Robert Wood Johnson Health Policy Investigator award, and the Distinguished Investigator award from AcademyHealth. He received his Ph.D. at the Florence Heller School for Advanced Studies in social welfare, Brandies University.

MARC NATTER is a pediatric rheumatologist and researcher in bioinformatics at the Boston Children’s Hospital Computational Health Informatics Program whose research is centered on the development and implementation of scalable software platforms that enable new ways of collecting and sharing data for research into chronic diseases. He is the chief informatics architect of the multi-site Childhood Arthritis & Rheumatology Research Alliance Registry for pediatric rheumatic diseases, leads the development of patient-facing technology for the Harvard Medical School-led Scalable Collaborative Infrastructure for Learning Healthcare System Clinical Data Research Network, and coordinates data integration and patient-facing technology for the PARTNERS Patient Powered Research Network and other projects. He received his M.D. from S.U.N.Y. at Stony Brook School of Medicine.

ALLISON OELSCHLAEGER is the chief data officer and director of the Office of Enterprise Data & Analytics at the Centers for Medicare & Medicaid Services (CMS). In this role, she focuses on maximizing the value and impact of CMS data for internal and external users. She oversees CMS’s data and information product portfolio and directs efforts to make CMS datasets available to external organizations. She also manages the development of advanced analytics using CMS data that help inform policy decisions and evaluate programs. Before joining CMS, she worked at the Lewin

Group, where she specialized in program evaluation and data analysis. She is a graduate of Georgetown University.

MARC OVERHAGE (NAM) is the chief health information officer for Anthem, Inc., and previously served as the chief medical informatics officer for Cerner and Siemens Health Services. He is an internationally recognized expert in health information modeling, standards, and interoperability as well as clinical decision support, health services research, and implementation science. Previously, Overhage was the director of medical informatics and a research scientist at the Regenstrief Institute, Inc., and professor of medicine and Regenstrief professor of medical informatics at the Indiana University School of Medicine. He also is a member of the medical staff of the Wishard Memorial Hospital. His research has focused on the use of informational interventions to modify provider behavior, including computerized provider order entry, clinical decision support systems, and other forms of feedback. These systems require clinical data to drive them and have led him to begin developing approaches to health information exchange. To facilitate this work, he has engaged in developing clinical information standards, advising the federal government on policy-guiding health information technology, and developing sustainable models for providing health information services. He received his B.A. in physics from Wabash College and an M.D. in medicine and a Ph.D. in biophysics from the Indiana University School of Medicine.

MITRA ROCCA is associate director of medical informatics, Office of Translational Science, Center for Drug Evaluation and Research (CDER), at the Food and Drug Administration (FDA). She joined the FDA in 2009 as the senior medical informatician responsible for developing the health information architecture of the Sentinel System. Rocca serves as the lead for the FDA CDER Health Information Technology (IT) Board, focusing on the use of health IT to enhance regulatory decision making. She also serves as the FDA CDER lead to Health Level Seven (HL7), responsible for the review of HL7 draft standards. Prior to joining FDA, she served as the associate director of health care informatics at Novartis Pharmaceuticals Corporation, focusing on the reuse of electronic health records in clinical research. She served as the co-chair of the HL7 Clinical Interoperability Council from 2012 to 2018. She is a fellow of the American Medical Informatics Association and holds an advanced degree in medical informatics from the University of Heidelberg in Germany.

CLAUDIA STEINER is the executive director of the Institute for Health Research at Kaiser Permanente Colorado. She served as director for the Division of Healthcare Delivery Data, Measures and Research, in the

Center for Delivery, Organization, and Markets within the Agency for Healthcare Research and Quality (AHRQ) until February 2017. There she led the division’s development and dissemination of data and software tools for use in research, policy analysis, quality improvement, and public reporting, with a particular focus on the Healthcare Cost and Utilization Project and the AHRQ Quality Indicators. She has conducted research on the influence of ambulatory surgery on standards of care, utilization, and clinical outcomes; the epidemiology of infectious diseases, including health care–associated infections; the prevalence and factors associated with read-missions to the acute care setting; and the use and impact of new medical technologies. She was a practicing internal medicine physician for 25 years with the Johns Hopkins Community Physicians and continues to serve as a practicing internist for adult patients with the Colorado Permanente Medical Group. She earned her medical degree and completed residency training in internal medicine at the University of Colorado Health Sciences Center. Subsequently, she obtained a master’s of public health at the Johns Hopkins School of Hygiene and Public Health while completing a research fellowship through the Department of Medicine at Johns Hopkins University.

MICKY TRIPATHI is the national coordinator for health information technology at the U.S. Department of Health and Human Services, where he leads the formulation of the federal health information technology (IT) strategy and coordinates federal health IT policies, standards, programs, and investments. He has more than 20 years of experience across the health IT landscape. Tripathi most recently served as chief alliance officer for Arcadia, a health care data and software company focused on population health management and value-based care; as project manager of the Argonaut Project, an industry collaboration to accelerate the adoption of Fast Healthcare Interoperability Resources; and as a board member of HL7, the Sequoia Project, the CommonWell Health Alliance, and the CARIN Alliance. He served as the president and chief executive officer of the Massachusetts eHealth Collaborative, a nonprofit health IT advisory and clinical data analytics company. He was also the founding president and chief executive officer of the Indiana Health Information Exchange (HIE), a statewide HIE partnered with the Regenstrief Institute; an executive advisor to the investment firm LRVHealth; and a fellow at the Berkman-Klein Center for Internet and Society at Harvard University. Prior to receiving his Ph.D., he was a presidential management fellow and a senior operations research analyst in the Office of the Secretary of Defense in Washington, DC, for which he received the Secretary of Defense Meritorious Civilian Service Medal. He holds a Ph.D. in political science from the Massachusetts Institute of Technology, a master’s degree in public policy from Harvard University, and an A.B. in political science from Vassar College.