Building Data Capacity
Interim Report 1 -
Looking Ahead at Data Needs
Committee on Building Data Capacity for
Patient-Centered Outcomes Research:
An Agenda for 2021 to 2030
Committee on National Statistics
Division of Behavioral and Social Sciences and Education
Board on Health Care Services
Health and Medicine Division
Computer Science and Telecommunications Board
Division on Engineering and Physical Sciences
A Consensus Study Report of
THE NATIONAL ACADEMIES PRESS
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This activity was supported by a contract between the National Academy of Sciences and the U.S. Department of Health and Human Services (award #HHSP23 3201400020B/75P00120F37102). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-26824-0
International Standard Book Number-10: 0-309-26824-9
Digital Object Identifier: https://doi.org/10.17226/26297
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Copyright 2021 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
Suggested citation: National Academies of Sciences, Engineering, and Medicine. (2021). Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 1—Looking Ahead at Data Needs. Washington, DC: The National Academies Press. https://doi.org/10.17226/26297.
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Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.
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COMMITTEE ON BUILDING DATA CAPACITY FOR PATIENT-CENTERED OUTCOMES RESEARCH: AN AGENDA FOR 2021 TO 2030
GEORGE ISHAM (Chair), HealthPartners Institute
JOHN F.P. BRIDGES, The Ohio State University
JULIE BYNUM, University of Michigan
ANGELA DOBES, IBD Plexus, Crohn’s & Colitis Foundation
OLUWADAMILOLA FAYANJU, The University of Pennsylvania
DEBORAH ESTRIN, Cornell Tech
CONSTANTINE GATSONIS, Brown University
ROBERT GOERGE, Chapin Hall, University of Chicago
GEORGE HRIPCSAK, Columbia University
LISA IEZZONI, Massachusetts General Hospital
S. CLAIBORNE JOHNSTON, The University of Texas at Austin
MIGUEL MARINO, Oregon Health & Science University
ELIZABETH MCGLYNN, Kaiser Permanente
DAVID MELTZER, University of Chicago
PAUL TANG, Stanford University and Palo Alto Medical Foundation
KRISZTINA MARTON, Study Director
MEGAN KEARNEY, Associate Program Officer (until June 2021)
RUTH COOPER, Associate Program Officer (from June 2021)
MARY GHITELMAN, Senior Program Assistant
BRIAN HARRIS-KOJETIN, Director, Committee on National Statistics
SHARYL NASS, Director, Board on Health Care Services
JON EISENBERG, Director, Computer Science and Telecommunications Board
SAUL RIVAS (National Academy of Medicine Fellow), University of Texas Rio Grande Valley
COMMITTEE ON NATIONAL STATISTICS
ROBERT M. GROVES (Chair), Georgetown University
ANNE C. CASE, Princeton University
MICK P. COUPER, University of Michigan
JANET M. CURRIE, Princeton University
DIANA FARRELL, JPMorgan Chase Institute
ROBERT GOERGE, Chapin Hall at the University of Chicago
ERICA L. GROSHEN, Cornell University
HILARY HOYNES, University of California, Berkeley
DANIEL KIFER, Pennsylvania State University
SHARON LOHR, Arizona State University (emerita)
JEROME P. REITER, Duke University
JUDITH A. SELTZER, University of California, Los Angeles
C. MATTHEW SNIPP, Stanford University
ELIZABETH A. STUART, Johns Hopkins University
JEANNETTE WING, Columbia University
BRIAN A. HARRIS-KOJETIN, Director
CONSTANCE F. CITRO, Senior Scholar
BOARD ON HEALTH CARE SERVICES
DAVID BLUMENTHAL (Chair), The Commonwealth Fund
ANDREW BINDMAN, Kaiser Foundation Health Plan, Inc.
NIRANJAN BOSE, Gates Ventures
MELINDA J. BEEUWKES BUNTIN, Vanderbilt University School of Medicine
NEIL S. CALMAN, The Institute for Family Health
PAUL CHUNG, Kaiser Permanente School of Medicine
PATRICIA M. DAVIDSON, Johns Hopkins University School of Nursing
MARTHA DAVIGLUS, University of Illinois at Chicago
JENNIFER E. DEVOE, Oregon Health & Science University
R. ADAMS DUDLEY, University of Minnesota
RICHARD G. FRANK, Harvard Medical School
TERRY FULMER, John A. Hartford Foundation
CINDY GILLESPIE, Arkansas Department of Human Services
ELMER HUERTA, The George Washington University Cancer Center
SHARON INOUYE, Harvard Medical School
JOHN LUMPKIN, Blue Cross Blue Shield of North Carolina Foundation
FAITH MITCHELL, The Urban Institute
DAVID B. PRYOR, Ascension Health
TRISH RILEY, National Academy for State Health Policy
WILLIAM SAGE, The University of Texas at Austin
HARDEEP SINGH, Baylor College of Medicine
SHARYL NASS, Director
COMPUTER SCIENCE AND TELECOMMUNICATIONS BOARD
LAURA HAAS (Chair), University of Massachusetts, Amherst
DAVID CULLER, University of California, Berkeley
ERIC HORVITZ, Microsoft Corporation
CHARLES ISBELL, Georgia Institute of Technology
BETH MYNATT, Georgia Institute of Technology
CRAIG PARTRIDGE, Colorado State University
DANIELA RUS, Massachusetts Institute of Technology
FRED B. SCHNEIDER, Cornell University
NAMBIRAJAN SESHADRI, University of California, San Diego
MARGO SELTZER, University of British Columbia
MOSHE VARDI, Rice University
JON EISENBERG, Director
This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.
We thank the following individuals for their review of this report: Cheryl R. Clark, Health Equity Research & Intervention, Center for Community Health and Health Equity, Brigham and Women’s Hospital; Darrell J. Gaskin, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health; Sherry Glied, Robert F. Wagner Graduate School of Public Service, New York University; Elizabeth Patzer, Department of Surgery and Health Services Research Center, Emory University; Robert L. Phillips, Jr., Center for Professionalism and Value in Health Care, American Board of Family Medicine Foundation; Russell Rothman, Institute for Medicine and Public Health, Vanderbilt University Medical Center; and Mariana F. Wolfner, Department of Molecular Biology and Genetics, Cornell University.
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions of this report, nor did they see the final draft before its release. The review of this report was overseen by Andrew B. Bindman, chief medical officer, Kaiser Foundation Health Plan and Hospitals and Alicia L. Carriquiry,
Department of Statistics, Iowa State University. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.
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