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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Building Data Capacity
for Patient-Centered
Outcomes Research

Priorities for the Next Decade

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

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by a contract between the National Academy of Sciences and the U.S. Department of Health and Human Services (award # HHSP233201400020B/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: 978-0-309-28711-1
International Standard Book Number-10: 0-309-28711-1
Digital Object Identifier: https://doi.org/10.17226/26489
Library of Congress Control Number: 2022941427

Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.

Copyright 2022 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. (2022). Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. https://doi.org/10.17226/26489.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

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The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.

The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president.

The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

Image

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.

Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.

For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

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

DEBORAH ESTRIN, Cornell Tech

OLUWADAMILOLA FAYANJU, The University of Pennsylvania

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

CRYSTAL BELL, Associate Program Officer

RUTH COOPER, Associate Program Officer

REBECCA KRONE, Program Coordinator

BRIAN HARRIS-KOJETIN, Director, Committee on National Statistics

SHARYL NASS, Director, Board on Health Care Services

JON EISENBERG, Senior Board Director, Computer Science and Telecommunications Board

SAUL RIVAS (National Academy of Medicine Fellow), University of Texas Rio Grande Valley

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

COMMITTEE ON NATIONAL STATISTICS

ROBERT M. GROVES (Chair), Georgetown University

LAWRENCE D. BOBO, Harvard University

ANNE C. CASE, Princeton University, emerita

MICK P. COUPER, University of Michigan

JANET M. CURRIE, Princeton University

DIANA FARRELL, JPMorgan Chase Institute, Washington, DC

ROBERT GOERGE, Chapin Hall at the University of Chicago

ERICA L. GROSHEN, Cornell University

HILARY HOYNES, University of California, Berkeley

DANIEL KIFER, The Pennsylvania State University

SHARON LOHR, Arizona State University, emerita

JEROME P. REITER, Duke University

JUDITH A. SELTZER, University of California, Los Angeles, emerita

C. MATTHEW SNIPP, Stanford University

ELIZABETH A. STUART, Johns Hopkins University

JEANNETTE WING, Columbia University

BRIAN HARRIS-KOJETIN, Director

MELISSA CHIU, Deputy Director

CONSTANCE F. CITRO, Senior Scholar

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

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

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

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

MARGO SELTZER, University of British Columbia

NAMBIRAJAN SESHADRI, University of California, San Diego

MOSHE VARDI, Rice University

JON EISENBERG, Senior Board Director

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

Acknowledgments

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: David Cella, Department of Medical Social Sciences, Northwestern University; Steven B. Cohen, Division for Statistical and Data Sciences, RTI International; Abel N. Kho, Institute for Public Health and Medicine Center for Health Information Partnerships, Feinberg School of Medicine, Northwestern University; Marsha Lillie-Blanton, Milken Institute School of Public Health, The George Washington University; Jennifer H. Madans, National Center for Health Statistics (retired) and Center for Inclusive Policy; Deven McGraw, Ciitizen Corporation; Ellen R. Meara, Department of Health Policy and Management, Harvard T.H. Chan School of Public Health; Jodi B. Segal, Center for Drug Safety and Effectiveness, Johns Hopkins University School of Medicine and Bloomberg School of Public Health; Joe V. Selby, Office of Director, Patient-Centered Outcomes Research Institute (retired); and Nigam H. Shah, Stanford Medicine, Stanford University.

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions of

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×

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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Building Data Capacity for Patient-Centered Outcomes Research: Priorities for the Next Decade. Washington, DC: The National Academies Press. doi: 10.17226/26489.
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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. Building Data Capacity for Patient-Centered Outcomes Research contains findings and conclusions in the areas that could benefit from being prioritized as part of ASPE's work, and offers input on strengthening the overall framework for building the data infrastructure over the coming years. The committee authoring this report also issued three interim reports, which summarized discussions from three workshops, and are included as appendices in the final report.

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