National Academies Press: OpenBook
Suggested Citation:"Front Matter." 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:"Front Matter." 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:"Front Matter." 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:"Front Matter." 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:"Front Matter." 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:"Front Matter." 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:"Front Matter." 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 viii Cite
Suggested Citation:"Front Matter." 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:"Front Matter." 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:"Front Matter." 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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PREPUBLICATION COPY, Uncorrected Proofs Building Data Capacity for Patient-Centered Outcomes Research: 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

PREPUBLICATION COPY, Uncorrected Proofs 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-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/26297 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 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. Building Data Capacity for Patient-Centered Outcomes Research: Interim Report 1 - Looking Ahead at Data Needs (2021). Washington, DC: The National Academies Press. https://doi.org/10.17226/26297.

PREPUBLICATION COPY, Uncorrected Proofs 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.

PREPUBLICATION COPY, Uncorrected Proofs 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.

PREPUBLICATION COPY, Uncorrected Proofs 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, 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 Sciences and Telecommunications Board SAUL RIVAS (National Academy of Medicine Fellow), University of Texas Rio Grande Valley v

PREPUBLICATION COPY, Uncorrected Proofs 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 vi

PREPUBLICATION COPY, Uncorrected Proofs 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

PREPUBLICATION COPY, Uncorrected Proofs 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 viii

PREPUBLICATION COPY, Uncorrected Proofs 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: 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. ix

PREPUBLICATION COPY, Uncorrected Proofs Table of Contents Summary 1 Introduction 2 Health Disparities Data Needs 3 Patient Perspectives on Data Needs 4 Researcher Perspectives on Data Needs Appendixes A Bibliographical Sketches of Committee Members B Workshop Agenda C Bibliographical Sketches of Workshop Presenters List of Boxes, Figures, and Table Boxes 1-1 Key Data Infrastructure Functionalities in the Existing Strategic Framework for Patient- Centered Outcomes Research 1-2 Building Blocks of the Patient-Centered Outcomes Research Data Infrastructure 1-3 Statement of Task for the Overall Study 2-1 An Example of How Data Silos Hinder the Ability to Answer Policy Questions: The Impact of Medicaid Expansion on Equity in Hospitalizations 2-2 An Example of How Data Silos Hinder the Ability to Answer Policy Questions: The Impact of Hospital Value-Based Purchasing on Equity in Post-hospitalization Functional Status 2-3 Disability Questions for Potential Inclusion in Electronic Health Records 4-1 Case Study: The Use of the Patient-Centered Outcomes Research Infrastructure to Study Whether Vitamin D Can Reduce the Burden of COVID-19 4-2 Person-Centered Primary Care Measures Figures 1-1 Patient-Centered Outcomes Research Trust Fund: Three streams of work and funding 1-2 ASPE’s strategic framework for the patient-centered outcomes research data infrastructure 2-1 Example of data available on social determinants of health 3-2 Evidation Health vision for person-generated health data framework 3-3 Episodic real-world evidence data points versus continuous data using digital technologies Table 3-1 Examples of Patient-experience Information Related to Chronic Fatigue Syndrome and Myalgic Encephalomyelitis in the FDA’s The Voice of the Patient Report x

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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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