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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 PRESSâ 500 Fifth Street, NWâ 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 # H Â HSP233201400020B/ 75P00120F37102). Any opinions, findings, conclusions, or recommendations ex- pressed 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.
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Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the Â studyâs statement of task by an authoring committee of experts. Reports typi- cally include findings, conclusions, and recommendations based on information gathered by the committee and the committeeâs 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.
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, Crohnâs & Colitis Foundation DEBORAH ESTRIN, Cornell TechÂ 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 v
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 vi
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 vii
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 viii
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 manu- script 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 com- ments and suggestions, they were not asked to endorse the conclusions of ix
x ACKNOWLEDGMENTS 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 car- ried 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.
Contents Summary 1 1 Committee Charge and Process 11 2 Background on the PCOR Data Infrastructure and the Office of the Secretary PCOR Trust Fund 17 3 Priority Areas for the PCOR Data Infrastructure 35 Appendixes A Biographical Sketches of Committee Members 53 B Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 1âLooking Ahead at Data Needs 59 C Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 2âData Standards, Methods, and Policy 149 D Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 3âA Comprehensive Ecosystem for PCOR 237 E Office of the Secretary PCOR Trust Fund Project Portfolio 335 xi
Boxes, Figures, and Tables BOXES 1-1 Statement of Task, 12 2-1 Key Data Infrastructure Functionalities in the Existing Strategic Framework for PCOR, 22 2-2 Building Blocks of the PCOR Data Infrastructure, 23 2-3 Key Themes That Emerged from the Stakeholder Prioritization Activity Commissioned by ASPE in 2020, 24 2-4 2020 Office of the Secretary PCOR Trust Fund Projects in Three HHS Priority Areas, 31 FIGURES 2-1 Office of the Secretary PCOR Trust Fund strategic framework for the PCOR data infrastructure, 21 2-2 Relationship between thematic areas funded and the five PCOR data infrastructure functionalities, 29 3-1 Framework for the role of enhanced data infrastructure and effective project management in improving health, 51 TABLES 2-1 Number of Office of the Secretary PCOR Trust Fund Projects by Data Infrastructure Functionality Addressed, 25 xiii
xiv BOXES, FIGURES, AND TABLES 2-2 Products Produced by Office of the Secretary PCOR Trust Fund Projects, 26 2-3 Examples of Products Produced by Office of the Secretary PCOR Trust Fund Projects, 27 2-4 Examples of HHS Secretarial Priorities and Office of the Secretary PCOR Trust Fund Projects, 28