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Suggested Citation:"Appendix C: Biographical Sketches of Speakers." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Suggested Citation:"Appendix C: Biographical Sketches of Speakers." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
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Page 52
Suggested Citation:"Appendix C: Biographical Sketches of Speakers." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
×
Page 53
Suggested Citation:"Appendix C: Biographical Sketches of Speakers." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
×
Page 54
Suggested Citation:"Appendix C: Biographical Sketches of Speakers." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
×
Page 55
Suggested Citation:"Appendix C: Biographical Sketches of Speakers." National Academies of Sciences, Engineering, and Medicine. 2021. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report Two - Data Standards, Methods, and Policy. Washington, DC: The National Academies Press. doi: 10.17226/26298.
×
Page 56

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  PREPUBLICATION COPY, Uncorrected Proofs    APPENDIX C Biographical Sketches of Speakers JULIA ADLER-MILSTEIN (NAM) is a professor of medicine and director of the Center for Clinical Informatics and Improvement Research at the University of California, San Francisco (UCSF). She spent 6 years on the faculty at the University of Michigan prior to joining UCSF. She is a leading researcher in health information technology policy, with a specific focus on electronic health records (EHR) and interoperability. She has examined policies and organizational strategies that enable effective use of EHR and promote interoperability. She is also an expert in EHR audit log data and its application to studying clinician behavior. Her research—used by researchers, health systems, and policy makers—identifies obstacles to progress and ways to overcome them. She has served on an array of influential committees and boards, including the NHS National Advisory Group on Health Information Technology, the Health Care Advisory Board for Politico, and the Interoperability Committee of the National Quality Forum. Adler-Milstein holds a Ph.D. in health policy from Harvard University. DON EUGENE DETMER (NAM) is professor of medical education at the University of Virginia. He has served as vice president for health sciences at the University of Virginia and the University of Utah, as the Dennis Gillings professor for health management at Cambridge University, as president/chief executive officer of the American Medical Informatics Association, and as medical director of policy for the American College of Surgeons. Professorial appointments have included university professor of health policy, professor of surgery, business administration, public health sciences, preventive medicine, as well as visiting professor at University College London. He is past chair of the Board of Regents of the National Library of Medicine; the National Committee on Vital and Health Statistics; the National Academies of Sciences, Engineering, and Medicine’s Board of Health Care Services; and Blue Ridge Academic Health Group, which he founded. Current boards include the Corporation for National Research Initiatives, the American College of Medical Informatics, and the International Academy of Health Sciences Informatics. He helped envision the national health information infrastructures of the United States and Hong Kong, as well as shaped policy for direct electronic communications of health records with patients in the United States and Europe. He earned an M.A. from Cambridge University and an M.D. from the University of Kansas. He completed postgraduate training at Johns Hopkins University, the National Institutes of Health, Duke Medical Center, and Harvard Business School. EVELYN GALLEGO is the chief executive officer and founder of EMI Advisors LLC, an 8(a) certified Small Minority-Owned Business, founded to deliver value-driven health data management advisory services to government and commercial clients. She helps clients to bridge the gap between health information technology policy and standards and business requirements. She has a strong ability to work across and build consensus with diverse stakeholder groups to include multidisciplinary providers, policy makers, healthcare payers, researchers, system vendors and implementers, and standard development organizations. Gallego provides specialized expertise in digital health interoperability and health policy with a focus on 51  

  PREPUBLICATION COPY, Uncorrected Proofs    alignment of regulatory, technical, and process improvement requirements to enable the effective adoption and use of technology. She is a thought leader in the areas of care coordination, social determinants of health, health information technology (IT) policy analysis and development, health information exchange and interoperability, and health IT standards development. She currently serves as the program manager and SME for three leading interoperability projects including the HL7 Gravity Project, the ONC STARS HIE Technical Assistance Program, and the NIH/AHRQ Multiple Chronic Care Electronic Care Plan Project. Gallego earned her international M.B.A. from the Schulich School of Business in Toronto, Canada, and her M.P.H. in health policy from George Washington University.   SHAUN GRANNIS is the vice president of data analytics and a medical informatics research scientist at the Regenstrief Institute. He is also the Sam Regenstrief professor of medical informatics and professor of family medicine at the Indiana University School of Medicine. In these roles, he collaborates with national and international health stakeholders seeking to advance health data technical infrastructure and data-sharing capabilities. He has provided identity management consultancy to organizations, including the World Health Organization and the Office of the National Coordinator for Health Information Technology. Grannis also supports health information exchange (HIE) activity among more than 120 hospitals in Indiana for use in clinical research and disease surveillance. His recent research focuses on developing and testing large-scale HIE-based solutions in support of population health and public health informatics; integrating clinical and social determinants of health (SDH) to identify at-risk patients in need of SDH services, which include nutrition counseling, financial planning, and medical-legal partnership assistance; developing and testing novel patient matching methods; and leveraging machine learning-based models to improve discovery and decision support in a variety of contexts. Grannis holds an M.D. from Michigan State University and bachelor’s degree in aerospace engineering from the Massachusetts Institute of Technology.   JOHN HALAMKA (NAM) is the president of Mayo Clinic Platform. Prior to the Mayo Clinic, he served as the executive director of the Health Technology Exploration Center for Beth Israel Lahey Health in Massachusetts. During his tenure at Beth Israel Lahey Health, he oversaw digital health relationships with industry, academia, and government worldwide. Previously, he was chief information officer at Beth Israel Deaconess Medical Center for more than 20 years. In his role at Beth Israel Deaconess Medical Center, Halamka was responsible for all clinical, financial, administrative and academic information technology (IT). As a Harvard Medical School professor, he served the George W. Bush administration, the Obama administration and governments around the world planning their health care information IT strategies. In addition, he also was the international healthcare innovation professor at Harvard Medical School. He remains chairman of New England Healthcare Exchange Network Inc. and is a practicing emergency medicine physician. Halamka received his B.S. in medical microbiology and his B.A. in public policy from Stanford University, his M.D. from the University of California, San Francisco, and his M.S. from Harvard University.     ABEL KHO is professor of medicine and preventive medicine in the Feinberg School of Medicine at Northwestern University and founding director of the Center for Health Information Partnerships and the Institute for Augmented Intelligence in Medicine. He has served as principal investigator for several regional or national projects including the ONC-funded Chicago Health IT Regional Extension Center, the Patient Centered Outcomes Research Institute-funded 52  

  PREPUBLICATION COPY, Uncorrected Proofs    Chicago Area Patient Centered Outcomes Research Network, and the Agency for Healthcare Research and Quality-funded Health Hearts in the Heartland consortium within the EvidenceNOW initiative. His research focuses on developing regional electronic health record- enabled data sharing platforms for a range of health applications including high throughput phenotyping, cohort discovery, estimating population level disease burden, and quality improvement. Kho received his M.D. from the Medical College of Wisconsin and completed a residency and chief residency in internal medicine at the University of Wisconsin–Madison. NIROSHA MAHENDRARATNAM LEDERER is director of real-world evidence strategy at Aetion, where she leads the engagement of federal accounts and advises clients on generating decision-grade evidence. Previously, she was a managing associate at the Duke-Margolis Center for Health Policy, where she led the Center’s real-world evidence portfolio. Prior to this position, she was a subject matter expert in the Oncology Center of Excellence at the U.S. Food and Drug Administration. While there, Lederer helped to implement patient-focused drug development in cancer products including clinical trial study design and product review, as well as foster consensus across U.S. and ex-U.S. health care stakeholders on best practices for patient-reported outcome capture, analysis, and communication. She has more than 15 years of pharmaceutical policy and health economics and outcomes research experiences, including providing evidence- generation advisory services at Avalere Health, working in commercial and medical roles at Genentech and Bristol-Myers Squibb, respectively, and serving on Capitol Hill during the passage of the Affordable Care Act. Lederer received her Ph.D. in health outcomes and policy from the University of North Carolina at Chapel Hill with a focus on large database analyses and decision-sciences. She received an M.S.P.H. in health policy and management from the Johns Hopkins Bloomberg School of Public Health and a B.A. in public health from the Johns Hopkins University. LARA MANGRAVITE is president of Sage Bionetworks, an organization focused on the development and implementation of practices for large-scale collaborative biomedical research. Sage Bionetworks’ work is centered on new approaches to scientific process that use open systems to enable community-based research regarding complex biomedical problems. Previously, she served as director of the systems biology research group at Sage Bionetworks where she focused on the application of collaborative approaches to advance understanding of disease biology and treatment outcomes at a systems level with the overriding goal of improving clinical care. Mangravite has a B.S. in physics from the Pennsylvania State University and a Ph.D. in pharmaceutical chemistry from the University of California, San Francisco. She completed a postdoctoral fellowship in cardiovascular pharmacogenomics at the Children’s Hospital Oakland Research Institute. DEVEN MCGRAW is general counsel and chief regulatory officer for Ciitizen, a consumer health technology start-up. Previously, she directed U.S. health privacy and security as deputy director, Health Information Privacy at the U.S. Department of Health and Human Services’ Office for Civil Rights and chief privacy officer (acting) of the Office of the National Coordinator for Health IT. Widely recognized for her expertise in health privacy, she directed the Health Privacy Project at the Center for Democracy & Technology for six years and led the privacy and security policy work for the HITECH Health IT Policy Committee. She also served as the chief operating officer of the National Partnership for Women and Families. She advised 53  

  PREPUBLICATION COPY, Uncorrected Proofs    health industry clients on HIPAA compliance and data governance while a partner at Manatt, Phelps & Phillips, LLP. McGraw graduated magna cum laude from Georgetown University Law Center and has an M.P.H from Johns Hopkins University. SHARON-LISE NORMAND is S. James Adelstein professor of health care policy (biostatistics) in the Department of Health Care Policy at Harvard Medical School and professor in the Department of Biostatistics at Harvard School of Public Health. Her research focuses on the development of statistical methods for health services and outcomes research, including the evaluation of medical devices, causal inference, provider profiling, evidence synthesis, item response theory, and latent variables analyses. Her application areas include cardiovascular disease, severe mental illness, medical device safety and effectiveness, and medical technology diffusion. Normand was the 2010 president of the Eastern North American Region of the International Biometrics Society and inaugural vice chair of the Patient Centered Outcomes Research Institute’s Methodology Committee (2010–2012). She was awarded the ASA 2011 Health Policy Statistics Section’s Long Term Excellence Award, the 2012 American Heart Association’s Distinguished Scientist Award, the 2017 American Heart Association Council on Quality of Care and Outcomes Research Outstanding Lifetime Achievement Award, and the 2018 Mosteller Statistician of the Year. She is a fellow of the American Statistical Association, the American Heart Association, the American College of Cardiology, and the American Association for the Advancement of Science. Normand earned her Ph.D. in biostatistics, M.Sc. and B.Sc. in statistics, and completed a postdoctoral fellowship in health care policy. RACHEL RICHESSON is a professor in the Department of Learning Health Sciences, School of Medicine at the University of Michigan. She conducts original research on the quality and usability of data from electronic health records (EHRs) for research and has fostered numerous interdisciplinary research collaborations. She has directed implementation of data standards for a number of multinational multisite clinical research and epidemiological studies, including the National Institutes of Health (NIH) Rare Diseases Clinical Research Network, Type 1 Diabetes TrialNet, and The Environmental Determinants of Diabetes in the Young study, and the national distributed Patient Centered Outcomes Research Network. Richesson currently leads the EHR Core for the NIH Health Systems Research Collaboratory, which is developing standards and quality metrics for clinical phenotyping using EHR data in pragmatic clinical trials. In addition, she and Department of Learning Health Science chair Charles Friedman colead the multi- stakeholder “Mobilizing Computable Biomedical Knowledge” community charged with establishing the standards, policies, and governance needed for biomedical knowledge to be widely disseminated and applied. Richesson holds a Ph.D. and an M.S. in health informatics and an M.P.H. from the University of Texas. PAMELA RILEY is medical director of the District of Columbia Department of Health Care Finance, overseeing medical administration and quality of care in the District of Columbia’s Title XIX (Medicaid), CHIP and Alliance Programs. She previously served as vice president for delivery system reform at The Commonwealth Fund, developing and managing grants focused on transforming health care delivery systems for vulnerable populations, including low-income groups, racial/ethnic minorities, and uninsured populations. She also served as program officer at the New York State Health Foundation, where she developed and managed grant-making programs in the areas of integrating mental health and substance use services, addressing the 54  

  PREPUBLICATION COPY, Uncorrected Proofs    needs of returning veterans and their families, and diabetes prevention and management. Earlier in her career, Riley served as clinical instructor in the Division of General Pediatrics at the Stanford University School of Medicine. She served as a Duke University Sanford School of Public Policy Global Health Policy fellow at the World Health Organization in Geneva, Switzerland, and has served as a volunteer physician in Peru and Guatemala. Riley has an M.D. from the University of California, Los Angeles (UCLA) David Geffen School of Medicine, and completed her internship and residency in pediatrics at Harbor-UCLA Medical Center in Torrance, California. She received an M.P.H. from the Harvard School of Public Health as a Commonwealth Fund fellow in minority health policy. SHERRI ROSE is an associate professor at Stanford University in the Center for Health Policy and Center for Primary Care and Outcomes Research. She is also codirector of the Health Policy Data Science Lab. Her research is centered on developing and integrating innovative statistical machine-learning approaches to improve human health. Within health policy, she works on risk adjustment, comparative effectiveness research, and health program evaluation. She has published interdisciplinary projects across varied outlets, including Biometrics, the Journal of the American Statistical Association, the Journal of Health Economics, Health Affairs, and the New England Journal of Medicine. Rose is the coeditor of Biostatistics and chair of the American Statistical Association’s Biometrics Section. Her honors include a National Institutes of Health Director's New Innovator Award, the ISPOR Bernie J. O'Brien New Investigator Award, and Mid-Career Awards from the American Statistical Association’s Health Policy Statistics Section and Penn-Rutgers Center for Causal Inference. She was also named a fellow of the American Statistical Association in 2020. In 2011, she coauthored the first book on machine learning for causal inference, with a sequel text released in 2018. Rose has a B.S. in statistics from George Washington University, and a Ph.D. in biostatistics from the University of California, Berkeley. PATRICK RYAN is vice president of observational health data analytics at Janssen Research and Development, where he is leading efforts to develop and apply analysis methods to better understand the real-world effects of medical products. He is an original collaborator in Observational Health Data Sciences and Informatics, a multistakeholder, interdisciplinary collaborative to create open-source solutions that bring out the value of observational health data through large-scale analytics. Ryan served as a principal investigator of the Observational Medical Outcomes Partnership, a public-private partnership chaired by the U.S. Food and Drug Administration, where he led methodological research to assess the appropriate use of observational health care data to identify and evaluate drug safety issues. He has worked in various positions within the pharmaceutical industry at Pfizer and GlaxoSmithKline and also in academia at the University of Arizona Arthritis Center. Ryan received his undergraduate degrees in computer science and operations research at Cornell University, his M.Eng. in operations research and industrial engineering at Cornell, and his Ph.D. in pharmaceutical outcomes and policy from University of North Carolina at Chapel Hill. NIGAM H. SHAH is a professor of medicine (biomedical informatics) at Stanford University, associate chief information officer for data science at Stanford Healthcare, and a member of the Biomedical Informatics Graduate Program as well as the Clinical Informatics Fellowship. His research focuses on combining machine learning and prior knowledge in medical ontologies to enable use cases of the learning health system. He received the AMIA New Investigator Award 55  

  PREPUBLICATION COPY, Uncorrected Proofs    for 2013 and the Stanford Biosciences Faculty Teaching Award for outstanding teaching in his graduate class on data driven medicine. He was elected into the American College of Medical Informatics in 2015 and was inducted into the American Society for Clinical Investigation in 2016. Shaw holds an M.B.B.S. from Baroda Medical College, India, a Ph.D from Penn State University, and completed his postdoctoral training at Stanford University.   VG VINOD VYDISWARAN is an assistant professor in the Department of Learning Health Sciences with a secondary appointment in the School of Information at the University of Michigan, Ann Arbor. His research focuses on developing and applying text mining, natural language processing, and machine-learning methodologies for extracting relevant information from health-related text corpora. This includes medically relevant information from clinical notes and biomedical literature, and studying the information quality and credibility of online health communication (via health forums and tweets). His previous work includes developing novel information retrieval models to assist clinical decision making, modeling information trustworthiness, and addressing the vocabulary gap between health professionals and laypersons. Vydiswaran received his Ph.D from University of Illinois at Urbana-Champaign and his M.Tech from the Indian Institute of Technology Bombay.   56  

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The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the United States Department of Health and Human Services, coordinates a portfolio of projects that build data capacity for conducting patient-centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices.

ASPE asked the National Academies to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. The committee's work will contribute to ASPE's development of a strategic plan that will guide their work related to PCOR data capacity over the next decade.

As part of its information gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure. This report, the second in a series of three interim reports, summarizes the discussion and committee conclusions from the second workshop, focused on data standards, methods, and policies that could make the PCOR data infrastructure more useful in the years ahead. Participants in the workshop included researchers and policy experts working in these areas.

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