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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 One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
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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 One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
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Page 50
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 One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
×
Page 51
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 One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
×
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 One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
×
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 One - Looking Ahead at Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/26297.
×
Page 54

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PREPUBLICATION COPY, Uncorrected Proofs APPENDIX C Biographical Sketches of Speakers KALEAB ABEBE is an associate professor of medicine, biostatistics, and clinical and translational science at the University of Pittsburgh. He also directs the Center for Research on Health Care Data Center as well as the Center for Clinical Trials & Data Coordination. His collaborative research focuses on design, conduct, coordination, and analysis of multicenter randomized controlled trials. Most recently, he led the DCC for the HALT-PKD Network, which comprised two seven-site clinical trials evaluating the impact of hypertensive medications and blood pressure control on the progression of PKD. Additionally, He collaborates with the Adolescent Medicine Division on the design and analysis of cluster randomized trials in sexual violence prevention. In addition to his research collaborations, Abebe is the director of the Clinical Trials Track for the MS in Clinical Research at the Institute for Clinical Research Education. He received his B.A. in mathematics from Goshen College and M.A. and Ph.D. in statistics from the University of Pittsburgh. REBEKAH ANGOVE is vice president for patient experience and program evaluation at Patient Advocate Foundation (PAF), where her work is focused on strategically expanding PAF’s patient-centered research and program evaluation initiatives. Angove is a health services researcher and leader in patient engagement. She leads efforts to identify patient needs, translate those needs to direct service and policy recommendations, and evaluate the impact of these programs and services on patients and the patient community. Her expertise spans numerous clinical research programs and advisory groups including service on the PCORnet Engagement committee and the Tulane Preventive Medicine Residency Advisory Committee. Angove received her Ph.D. in public and community health from the Medical College of Wisconsin. ANDREW BAZEMORE (NAM) is the senior vice president of research and policy at the American Board of Family Medicine and also serves as the director of the Robert Graham Center for Policy Studies in Family Medicine. Bazemore helped cultivate the growth and evolution of the Graham Center into an internationally known primary care research center with diverse funding sources. He guided and participated in the Graham Center's research with special interest in access to care for underserved populations, health workforce and training, and spatial analysis. Bazemore also led the Graham Center’s emphasis on developing tools that empower primary care providers, leaders, and policy makers. He serves on the faculties of the Departments of Family Medicine at Georgetown University and Virginia Commonwealth University. Bazemore received his M.D. from the University of North Carolina, and his M.P.H. from Harvard University School of Public Health. ROBERT M. CALIFF (NAM) is the head of clinical policy and strategy for Verily and Google Health. He has led major initiatives aimed at improving methods and infrastructure for clinical research, including the Clinical Trials Transformation Initiative, a public-private partnership cofounded by the U.S. Food and Drug Administration (FDA) and Duke. He has also served as deputy commissioner for medical products and tobacco in FDA 2015 to 2016 and as commissioner of food and drugs from 2016 to 2017. He is a nationally and internationally recognized leader in cardiovascular medicine, health outcomes research, health care quality, and 49

PREPUBLICATION COPY, Uncorrected Proofs clinical research, and one of the most frequently cited authors in biomedical science. Califf received his M.D. from the Duke University School of Medicine. DAVID CELLA (NAM) is Ralph Seal Paffenbarger professor and chair of the Department of Medical Social Sciences, and professor of neurology, pediatrics, preventive medicine (Health and Biomedical Informatics) and psychiatry and behavioral sciences, at Northwestern University. He is also director of the Institute for Public Health and Medicine Center for Patient-Centered Outcomes at Northwestern. Cella plays a leadership role in the development and orchestration of transdisciplinary scientific collaborations and oversees basic and applied social science research to advance the understanding of the mechanisms and measurement of health and disease. Currently he is the multiple principal investigator of the Environmental Children’s Health Outcomes Consortium PRO Core grant, and he also leads a health system-wide symptom monitoring and management project under the NCI Moonshot Program. A theme of his work has been ensuring that the voice of the patient is reflected in clinical care, research, and policy. A major focus of many of these initiatives has been ensuring measurement sensitive and appropriate to diverse populations. Cella received his Ph.D. from Loyola University of Chicago. GISELLE CORBIE-SMITH (NAM) is a Kenan distinguished professor of the Departments of Social Medicine and Medicine, director of the University of North Carolina (UNC) Center for Health Equity Research in the UNC School of Medicine and associate provost for UNC Rural Initiatives at the UNC at Chapel Hill. She is nationally recognized for her scholarly work on the inclusion of disparity populations in research and is accomplished in drawing communities, faculty, and health care providers into working partnerships in clinical and translational research. Her empirical work, using both qualitative and quantitative methodologies, has focused on the methodological, ethical, and practical issues of research to address racial disparities in health. She is currently the co-principal investigator for the Advancing Change Leadership Clinical Scholars Program. Corbie-Smith Dr. Corbie-Smith currently serves as one of the principal investigators on the Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) Coordination and Data Collection Center funded by the National Institute on Minority Health and Health Disparities. She received her M.Sc. in clinical research from Emory University and her M.D. from the Albert Einstein College of Medicine. NANCY DE LEW serves as the senior career official in the Office of Health Policy in the Office of the Assistant Secretary for Planning and Evaluation where she leads a team who apply their skills in policy development, strategic planning, research, and evaluation to some of the department’s most challenging health policy problems. She provides executive leadership and coordination on a broad range of health care financing, coverage, access, public health, and quality issues. She has worked with Congress on a number of major pieces of legislation over the course of her career including the Affordable Care Act in 2010, the Medicare Modernization Act of 2003, the Balanced Budget Act of 1997, the Health Insurance Portability and Accountability Act of 1996, and the Medicare Catastrophic Coverage Act of 1988. De Lew received her M.A. and M.P.A. in political science and public administration from the University of Illinois at Urbana. GARY EPSTEIN-LUBOW is an associate professor of psychiatry and human behavior and associate professor of medical science at Alpert Medical School of Brown University. He is also 50

PREPUBLICATION COPY, Uncorrected Proofs an associate professor of health services, policy and practice at Brown University School of Public Health. Epstein-Lubow is a geriatric psychiatrist with research, teaching, policy, clinical and administrative expertise related to geriatric psychiatry patients and family caregiver health, and serves as team leader of the stakeholder engagement team for the National Institute on Aging’s Imbedded Pragmatic Alzheimer's Disease and AD-Related Dementias Clinical Trials Collaboratory. He is also an associate director of the Centers for Disease Control and Prevention BOLD Public Health Center of Excellence for Dementia Caregiving. He earned his M.D. from Ohio State University’s College of Medicine and Public Health; he completed his general psychiatry residency, geriatric psychiatry fellowship, and postdoctoral research at Brown University and Butler Hospital. KAREN E. JOYNT MADDOX is a practicing cardiologist at Barnes-Jewish Hospital and an assistant professor at Washington University School of Medicine and School of Social Work, as well as a health policy advisor for BJC Healthcare Her research interests include (1) improving the measurement of the quality and efficiency of physicians, hospitals and health systems; (2) understanding the impact of policy interventions on health care, with a focus on value-based and alternative payment models; and (3) reducing disparities in care, with a focus on vulnerable populations including racial and ethnic minorities, individuals living in poverty, individuals with disabilities, frail elders, and those in rural areas. Joynt Maddox received her A.B. in public policy from the Woodrow Wilson School at Princeton University, and her M.D. from Duke University School of Medicine. She trained in internal medicine at Duke University Medical Center and in cardiovascular medicine at Brigham and Women’s Hospital. She also completed a research fellowship in Health Policy at the Harvard School of Public Health, from which she received her M.P.H. MITCHELL (MITCH) R. LUNN is an assistant professor in the Division of Nephrology of the Department of Medicine at Stanford University School of Medicine. As an internist and nephrologist with a strong interest in technology and sexual and gender minority (SGM) health, his research is designed to characterize the health and well-being of these populations. Through the use of existing and emerging technologies, Lunn focuses on improving understanding of the factors that positively and negatively influence SGM health including research on SGM health disparities, SGM societal experiences (in and out of health care), provider education about SGM health, and institutional climate towards SGM people. He is the co-director of PRIDEnet, a participant-powered research network of SGM people that engages SGM communities at all stages of the biomedical research process: research question generation and prioritization, study design, recruitment, participation, data analysis, and results dissemination. He is also the co- director of The PRIDE Study, a national, online, prospective, longitudinal general health cohort study. He earned his M.D. from Stanford University School of Medicine, and his M.A.S. in clinical research from the University of California, San Francisco (UCSF). He completed internal medicine internship and residency training at Brigham and Women’s Hospital and nephrology fellowship at UCSF. DAVID O. MELTZER (NAM) is chief of the Section of Hospital Medicine, director of the Center for Health and the Social Sciences, and chair of the Committee on Clinical and Translational Science at the University of Chicago, where he is professor in the Department of Medicine, and affiliated faculty at the University of Chicago Harris School of Public Policy and 51

PREPUBLICATION COPY, Uncorrected Proofs the Department of Economics. His research explores problems in health economics and public policy with a focus on the theoretical foundations of medical cost-effectiveness analysis and the cost and quality of hospital care. He is also currently leading a Centers for Medicaid & Medicare Innovation Challenge award to study the effects of improved continuity in the doctor patient relationship between the inpatient and outpatient setting on the costs and outcomes of care for frequently hospitalized Medicare patients. Meltzer received his M.D. and Ph.D. in economics from the University of Chicago and completed his residency in internal medicine at Brigham and Women’s Hospital in Boston. MEGAN MORRIS is an associate professor in the Division of General Internal Medicine at the University of Colorado, Anschutz Medical Campus, and is the founder/director of the Learning Collaborative to Address Disability Equity in Healthcare, a national consortium of health care organizations working toward advancing equitable health care for patients with disabilities. Morris researches disparities in care experienced by persons with disabilities, with a focus on provider and health care organization-level factors that negatively impact the quality of care delivered to patients with disabilities. Using qualitative and mixed methods, she has led multiple studies in the area, including studies examining providers’ implicit disability bias and a PCOR Institute funded trial comparing methods to improve the quality of communication between patients with disabilities and their healthcare team. Morris received her M.S. in speech-language pathology, her M.P.H. in health systems and policy, and her Ph.D. in rehabilitation science from the University of Washington. ELISABETH M. OEHRLEIN is assistant vice president, Research and Programs at the National Health Council (NHC). In this role, she crafts the NHC’s annual research and programmatic agenda in service to the organization’s mission and leads the NHC’s research and programmatic work on value, real-world evidence, and patient engagement. She is a mixed- methods researcher with expertise in epidemiologic, qualitative, and patient-engagement methods, as well as patient-focused medical product development. Her research interests include developing new methods for applying patient-provided information when developing real-world evidence to ensure studies reflect the “real world” as closely as possible, as well as developing new methods for patient-journey mapping. Oehrlein holds an M.S. in epidemiology from the University of Maryland School of Medicine’s Department of Epidemiology and Human Genetics, and a Ph.D. in pharmaceutical health services research with a concentration in comparative effectiveness research/patient-centered outcomes research from the University of Maryland School of Pharmacy. BRAY PATRICK-LAKE is senior director of Strategic Partnerships at Evidation Health, where she develops collaborations to support the design and implementation of participant-centered studies and the regulatory and clinical acceptance of digital measures. She serves on the Digital Medicine Society’s Scientific Leadership Board, Reagan Udall Foundation’s IMEDS Steering Committee, and American College of Cardiology’s National Cardiovascular Data Registry Oversight Board. Previously, she was a member of the All of Us National Advisory Panel, National Academies of Sciences, Engineering, and Medicine Health Science Policy Board, and director of Stakeholder Engagement for the Clinical Trials Transformation Initiative (CTTI) at Duke University, where her work involved actively engaging patient advocacy organizations and 52

PREPUBLICATION COPY, Uncorrected Proofs other stakeholders in the CTTI’s efforts to improve clinical trials. She holds a B.S. from the University of Georgia and an M.F.S. from National University. SCOTT RAMSEY is a physician, cancer researcher and health economist. He co-directs the Hutchinson Institute for Cancer Outcomes Research, or HICOR at Fred Hutch. The institute aims to reduce the economic and human burden of cancer by improving the efficiency and effectiveness of cancer care. Ramsey’s research focuses on cancer outcomes, health care delivery, and economic evaluations of new and existing cancer screening and treatment technologies. He also explores methods for engaging a diverse range of stakeholders to help inform how research studies are prioritized and designed. He designs and conducts studies that weigh the costs and benefits of various treatment and screening approaches. Ramsey received his M.D. from the University of Iowa, College of Medicine, and his Ph.D. from the University of Pennsylvania, Wharton School. THOMAS SEQUIST is the chief patient experience and equity officer at Mass General Brigham. In this role, he leads systemwide strategies for improving patient experience and health care equity, while also overseeing quality and safety. He is a practicing general internist at Brigham and Women’s Hospital and is a professor of medicine and professor of health care policy at Harvard Medical School. Sequist’s research interests include ambulatory quality measurement and improvement, with a focus on patient and provider education, and the innovative use of health information technology. He is particularly interested in health policy issues affecting care for Native Americans and has worked collaboratively with the Indian Health Service to evaluate the provision of care for this population. He is a member of the Taos Pueblo tribe in New Mexico and is committed to improving Native American health care, serving as director of the Four Directions Summer Research Program at Harvard Medical School and the medical director of the Brigham and Women’s Hospital Physician Outreach Program with the Indian Health Service. He graduated from Cornell University with a B.S. in chemical engineering. He received his M.D. from Harvard Medical School and M.P.H. from the Harvard School of Public Health. SCOTT R. SMITH is director of the Division of Health Care Quality and Outcomes in the Office of the Assistant Secretary for Planning and Evaluation. His division conducts research on how health policies influence health care quality and outcomes in state and federal programs. In addition, the division is responsible for managing the Patient-Centered Outcomes Research data infrastructure portfolio. His interests are studying quality metrics in Medicare and Medicaid, building national data capacity for conducting patient centered outcomes research, strengthening research programs, and facilitating support for a learning health care system. He has directed research programs on comparative effectiveness and pharmaceutical outcomes at the Agency for Healthcare Research and Quality and was a member of the tenured faculty at the University of North Carolina at Chapel Hill. He received an M.S.P.H. from the University of Illinois at Urbana-Champaign, and a Ph.D. from the University of Michigan BENJAMIN SOMMERS (NAM) was appointed the deputy assistant secretary for Health Policy in Office of the Assistant Secretary for Planning and Evaluation. He is a health economist and primary care physician whose main research interests are health policy for vulnerable populations and the health care safety net. He has received numerous awards including the 53

PREPUBLICATION COPY, Uncorrected Proofs Health Services Research Impact Award and the Article-of-the-Year Award from Academy Health, and the Outstanding Junior Investigator Award from the Society of General Internal Medicine. His research has been published in the New England Journal of Medicine, Journal of the American Medical Association, Journal of Health Economics, and Health Affairs, and covered by The New York Times, Wall Street Journal, and Washington Post. He received both his Ph.D. in health policy and his M.D. from Harvard University. KURT C. STANGE (NAM) is distinguished university professor, Dorothy Jones Weatherhead professor of medicine, and professor in the Departments of Family Medicine and Community Health, Population and Quantitative Health Sciences, and Sociology at the Case Western Reserve University, where he serves as director of the Center for Community Health Integration. He is a family and public health physician, practicing at Neighborhood Family Practice, a federally qualified community health center in Cleveland, Ohio. Stange is active in practice-based, multimethod, participatory research and development that aims to understand and improve primary health care and community health. He uses complexity science to guide and interpret integrated qualitative and quantitative research, and has been working on participatory methods to advance community health and to develop computational models of primary health care and patient-centered, population health and equity outcomes. He has been locally active in the COVID-19 pandemic response and produced a report on the lessons of the pandemic for the National Academies’ report Implementing High-Quality Primary Care: Rebuilding the Foundation of Health Care. He is an American Cancer Society clinical research professor and a scholar of the Institute for Integrative Health. Stange received his M.D. from Albany Medical College, and his Ph.D. from the University of North Carolina School of Public Health. 54

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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 first in a series of three interim reports, summarizes the discussion and committee conclusions from the first workshop, focused on looking ahead at data user needs over the next decade. The workshop included representatives of patient groups with a wide reach and researchers with broad research interests as well as an understanding of the PCOR infrastructure.

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