DIGITAL DATA IMPROVEMENT PRIORITIES
FOR CONTINUOUS LEARNING IN
HEALTH AND HEALTH CARE

Workshop Summary

Claudia Grossmann, Brian Powers, and Julia Sanders, Rapporteurs

Roundtable on Value & Science-Driven Health Care

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu



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THE LEARNING HEALTH SYSTEM SERIES ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE DIGITAL DA IMPROVEMENT PRIORITIES TA FOR CONTINUOUS LEARNING IN HEALTH AND HEALTH CARE Workshop Summary Claudia Grossmann, Brian Powers, and Julia Sanders, Rapporteurs Roundtable on Value & Science-Driven Health Care

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THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Govern- ing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineer- ing, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropri- ate balance. This study was supported by Contract/Grant No. HHSP23320110009EC between the National Academy of Sciences and the Office of the National Coordinator for Health Information Technology. The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the project. International Standard Book Number-13:  978-0-309-25941-5 International Standard Book Number-10:  0-309-25941-X Additional copies of this report are available for sale 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 2013 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent ad- opted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2013. Digital data improvement priorities for continuous learning in health and health care: Workshop summary. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe Advising the Nation. Improving Health.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding en- gineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Insti- tute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Coun- cil is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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PLANNING COMMITTEE ON DIGITAL DATA PRIORITIES FOR CONTINUOUS LEARING1 JAMES WALKER (Chair), Chief Health Information Officer, Geisinger Health System JUSTINE CARR, Chief Medical Officer, Steward Health Care WILLIAM DuMOUCHEL, Chief Statistical Scientist, Oracle Health Sciences JAMIE HEYWOOD, Chairman, PatientsLikeMe REBECCA KUSH, President and CEO, Clinical Data Standards Interchange Consortium LISA LEE, Chief Science Officer, Office of Surveillance, Epidemiology, and Laboratory Sciences, Centers for Disease Control and Prevention THERESA MULLIN, Director, Office of Planning and Informatics, Center for Drug Evaluation and Research, Food and Drug Administration LUCILA OHNO-MACHADO, Founding Chief, Biomedical Informatics, University of California, San Diego RICHARD PLATT, Chair, Population Medicine, Harvard University JIM SCANLON, Deputy Assistant Secretary for Planning and Evaluation (Science and Policy), U.S. Department of Health and Human Services PAUL STANG, Senior Director of Epidemeology, Johnson & Johnson WALTER SUAREZ, Director, Health IT Strategy and Policy, Kaiser Permanente IOM Staff CLAUDIA GROSSMANN, Senior Program Officer BRIAN POWERS, Senior Program Assistant (through July 2012) VALERIE ROHRBACH, Senior Program Assistant JULIA SANDERS, Senior Program Assistant ROBERT SAUNDERS, Study Director LEIGH STUCKHARDT, Program Associate ISABELLE VON KOHORN, Program Officer BARRET ZIMMERMANN, Program Assistant J. MICHAEL McGINNIS, Senior Scholar, Executive Director, Roundtable on Value & Science-Driven Health Care 1  Institute of Medicine planning committees are solely responsible for organizing the work- shop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

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ROUNDTABLE ON VALUE & SCIENCE-DRIVEN HEALTH CARE1 MARK B. McCLELLAN (Chair), Director, Engelberg Center, The Brookings Institution DAVID BLUMENTHAL, President, The Commonwealth Fund BRUCE G. BODAKEN, Chairman, President, and CEO, Blue Shield of California PAUL CHEW, Chief Science Officer and Chief Medical Officer, Sanofi U.S. CAROLYN M. CLANCY, Director, Agency for Healthcare Research and Quality (Ex Officio) FRANCIS COLLINS, Director, National Institutes of Health (Ex Officio) (designee: Susan Shurin) HELEN DARLING, President, National Business Group on Health SUSAN D. DEVORE, Chief Executive Officer, Premier, Inc. RICHARD FANTE, Regional VP, Americans, AstraZeneca JUDITH FAULKNER, Founder and CEO, Epic Health Systems THOMAS R. FRIEDEN, Director, Centers for Disease Control and Prevention (Ex Officio) (designee: Gail R. Janes) PATRICIA A. GABOW, CEO, Denver Health ATUL GAWANDE, General and Endocrine Surgeon, Brigham and Women’s Hospital GARY L. GOTTLIEB, President and CEO, Partners HealthCare System JAMES A. GUEST, President, Consumers Union GEORGE C. HALVORSON, Chairman and CEO, Kaiser Permanente MARGARET A. HAMBURG, Commissioner, Food and Drug Administration (Ex Officio) (designee: Peter Lurie) JAMES HEYWOOD, Co-Founder and Chairman, PatientsLikeMe RALPH I. HORWITZ, Senior VP, Clinical Evaluation Sciences, GlaxoSmithKline BRENT C. JAMES, Chief Quality Officer and Executive Director, Institute for Health Care Delivery Research, Intermountain Healthcare MICHAEL M. E. JOHNS, Chancellor, Emory University CRAIG JONES, Director, Vermont Blueprint for Health GARY KAPLAN, Chairman and CEO, Virgina Mason Health System RICHARD C. LARSON, Mitsui Professor, Massachusetts Institute of Technology JAMES L. MADARA, CEO, American Medical Association 1  Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vii

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FARZAD MOSTASHARI, National Coordinator, Office of the National Coordinator for Health IT (Ex Officio) MARY D. NAYLOR, Professor and Director, Center for Transitions in Health, University of Pennsylvania WILLIAM D. NOVELLI, Former CEO, AARP; Professor, Georgetown University SAM NUSSBAUM, Executive VP, Clinical Health Policy and Chief Medical Officer, WellPoint, Inc. JONATHAN B. PERLIN, Chief Medical Officer and President, Clinical & Physician Services, Hospital Corporation of America, Inc. ROBERT A. PETZEL, Under Secretary for Health, Department of Veterans Affairs (Ex Officio) RICHARD PLATT, Professor and Chair, Population Medicine, Harvard Medical School JOHN W. ROWE, Professor, Mailman School of Public Health, Columbia University JOE SELBY, Executive Director, PCORI MARK D. SMITH, President and CEO, California HealthCare Foundation GLENN D. STEELE, President and CEO, Geisinger Health System MARILYN TAVENNER, Administrator, Centers for Medicare & Medicaid Services (Ex Officio) (designee: Patrick Conway) REED D. TUCKSON, Executive VP and Chief of Medical Affairs, UnitedHealth Group MARY WAKEFIELD, Administrator, Health Resources and Services Administration (Ex Officio) DEBRA B. WHITMAN, Executive Vice President, Policy and International, AARP JONATHAN WOODSON, Assistant Secretary for Health, Department of Defense (Ex Officio) viii

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Institute of Medicine Roundtable on Value & Science-Driven Health Care Charter and Vision Statement The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care has been convened to help transform the way evidence on clinical effectiveness is generated and used to improve health and health care. Participants have set a goal that, by the year 2020, 90 percent of clini- cal decisions will be supported by accurate, timely, and up-to-date clini- cal information, and will reflect the best available evidence. Roundtable members will work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possible solutions, ­ and the priorities for action, and will marshal the resources of the sec- tors represented on the Roundtable to work for sustained public–private cooperation for change. ****************************************** Vision:  Our vision is for the development of a continuously learning health system in which science, informatics, incentives, and culture are aligned for continuous improvement and innovation—with best practices seamlessly embedded in the care process and new knowledge captured as an integral by-product of the care experience. Goal:  By the year 2020, 90 percent of clinical decisions will be sup- ported by accurate, timely, and up-to-date clinical information, and will reflect the best available evidence. We feel that this presents a tangible focus for progress toward our vision, that Americans ought to expect at least this level of performance, that it should be feasible with existing re- sources and emerging tools, and that measures can be developed to track and stimulate progress. Context: As unprecedented developments in the diagnosis, treatment, and long-term management of disease bring Americans closer than ever to the promise of personalized health care, we are faced with similarly unprecedented challenges to identify and deliver the care most appropriate for individual needs and conditions. Care that is important is often not delivered. Care that is delivered is often not important. In part, this is due to our failure to apply the evidence we have about the medical care that is most effective—a failure related to shortfalls in provider knowledge and accountability, inadequate care coordination and support, lack of insur- ance, poorly aligned payment incentives, and misplaced patient expecta- tions. Increasingly, it is also a result of our limited capacity for timely generation of evidence on the relative effectiveness, efficiency, and safety of available and emerging interventions. Improving the value of the return on our healthcare investment is a vital imperative that will require much

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greater capacity to evaluate high priority clinical interventions, stronger links between clinical research and practice, and reorientation of the in- centives to apply new insights. We must quicken our efforts to position evidence development and application as natural outgrowths of clinical care—to foster health care that learns. Approach:  The IOM Roundtable on Value & Science-Driven Health Care serves as a forum to facilitate the collaborative assessment and action around issues central to achieving the vision and goal stated. The chal- lenges are myriad and include issues that must be addressed to improve evidence development, evidence application, and the capacity to advance progress on both dimensions. To address these challenges, as leaders in their fields, Roundtable members work with their colleagues to identify the issues not being adequately addressed, the nature of the barriers and possi- ble solutions, and the priorities for action, and marshal the resources of the sectors represented on the Roundtable to work for sustained public-private cooperation for change. Activities include collaborative exploration of new and expedited approaches to assessing the effectiveness of diagnostic and treatment interventions, better use of the patient care experience to generate evidence on effectiveness and efficiency of care, identification of assessment priorities, and communication strategies to enhance provider and patient understanding and support for interventions proven to work best and deliver value in health care. Core concepts and principles: For the purpose of the Roundtable activities, we define science-driven health care broadly to mean that, to the greatest extent possible, the decisions that shape the health and health care of Americans—by patients, providers, payers and policymakers alike—will be grounded on a reliable evidence base, will account appropriately for individual variation in patient needs, and will support the generation of new insights on clinical effectiveness. Evidence is generally considered to be information from clinical experience that has met some established test of validity, and the appropriate standard is determined according to the requirements of the intervention and clinical circumstance. Processes that involve the development and use of evidence should be accessible and transparent to all stakeholders. A common commitment to certain principles and priorities guides the activities of the Roundtable and its members, including the commitment to: the right health care for each person; putting the best evidence into practice; establishing the effectiveness, efficiency and safety of medical care delivered; building constant measurement into our healthcare investments; the establishment of healthcare data as a public good; shared responsibility distributed equitably across stakeholders, both public and private; collab- orative stakeholder involvement in priority setting; transparency in the ex- ecution of activities and reporting of results; and subjugation of individual political or stakeholder perspectives in favor of the common good.

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Reviewers This workshop summary has been reviewed in draft form by individu- als chosen for their diverse perspectives and technical expertise, in accor- dance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published workshop summary as sound as possible and to ensure that the workshop summary meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We wish to thank the following individuals for their review of this workshop summary: Alfred DeMaria, Massachusetts Department of Public Health Shaun Grannis, Regenstrief Institute, Inc. Erin Holve, AcademyHealth Jonathan Silverstein, NorthShore University Health System Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the work- shop summary before its release. The review of this workshop summary was overseen by Joy Keeler Tobin, MITRE. Appointed by the Institute of Medicine, she was responsible for making certain that an independent examination of this workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this workshop summary rests entirely with the authors and the institution. xi

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Preface In light of the challenges and opportunities associated with the increas- ing amount of digital health and health-related information being generated and collected in modern society, the Institute of Medicine’s Roundtable on Value & Science-Driven Health Care, with the support of the Office of the National Coordinator for Health Information Technology, convened a workshop on Digital Data Priorities for Continuous Learning in Health and Health Care, which is summarized in this publication. Experts from a wide range of disciplines—including medicine, public health, informatics, health information technology, health care services research, health care quality reporting, biomedical research, clinical research, statistics, medical product manufacturing, health care payment and financing, and patient advocacy—met to explore the data quality issues and strategies central to the increasing capture and use of digital health data for knowledge develop- ment. This publication summarizes discussions to clarify understanding of, and accelerate progress around, data improvement priorities for the digital health data utility. The vision of the Roundtable is for a health system in which learn- ing is continuous, with medical evidence generated by capturing the care experience and applied to ensure and improve best care practices. Since its inception in 2006, the Roundtable has set out to help realize this vision through the involvement and support of senior leadership from key health care stakeholders. In engaging the nation’s leaders in workshops and other xiii

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xiv PREFACE activities, Roundtable members and colleagues provide guidance on issues important to advancing the development and use of a digital health data utility for knowledge generation and continuous improvement. Building on this groundwork, the objectives of this workshop were to identify and characterize the current deficiencies in the reliability, availabil- ity, and usability of digital health data and consider strategies, priorities, and responsibilities to address such deficiencies. Content was structured to explore the data quality challenges and opportunities in a learning health system associated with population and care process management, clinical research, translational informatics, and public health support at the na- tional and state level. Workshop discussion also explored the potential for learning from large-scale health datasets, focusing on innovative ap- proaches to overcoming the challenges of distributed data, data harmoniza- tion, and identity resolution. Multiple individuals donated valuable time toward the development of this publication. We would like to acknowledge and offer strong apprecia- tion for the contributors to this volume for their presence at the workshop and their efforts to further develop their presentations into the summaries contained in this publication. We are especially indebted to those who provided counsel by serving on the planning committee for this workshop, including Justine Carr (Steward Health Care), William DuMouchel (Oracle Health Sciences), Jamie Heywood (PatientsLikeMe), Rebecca Kush (Clinical Data Standards Interchange Consortium), Lisa Lee (CDC, Office of Sur- veillance, Epidemiology, and Laboratory Services), Theresa Mullin (FDA, Center for Drug Evaluation and Research), Lucila Ohno-Machado (Uni- versity of California, San Diego), Richard Platt (Harvard University), Jim Scanlon (Department of Health and Human Services), Paul Stang (Johnson & Johnson), and Walter Suarez (Kaiser Permanente). Under the leadership of senior program officer Claudia Grossmann, a number of Roundtable staff played instrumental roles in coordinating the workshop and translating the workshop proceedings into this summary, including Brian Powers, Valerie Rohrbach, Julia Sanders, Robert Saunders, Leigh Stuckhardt, and Isabelle Von Kohorn. We would also like to thank Daniel Bethea, Laura Harbold DeStefano, Christine Stencel, and Sarah Ziegenhorn for helping to coordinate various aspects of review, production, and publication. Reliable digital health data represent the foundational elements of a continuously learning health system. The discussions summarized in this workshop explore the potential and challenges for utilizing these data for learning and outline potential strategies and actions to catalyze progress.

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PREFACE xv We believe Digital Data Improvement Priorities for Continuous Learning in Health and Health Care will be a valuable resource as efforts to build and leverage the digital health data utility continue to move forward. James Walker, Chair Planning Committee on Digital Data Priorities for Continuous Learning Chief Health Information Officer Geisinger Health System J. Michael McGinnis Senior Scholar Executive Director Roundtable on Value & Science-Driven Health Care Institute of Medicine

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Contents 1 Introduction 1 Data Sources in the Digital Health Utility, 3 Moving to a Continuously Learning Health System, 4 Workshop Scope and Objectives, 5 Organization of the Summary, 6 2 Data Quality Challenges and Opportunities in a Learning Health System 9 Introduction, 10 Challenges for Data Collection and Aggregation, 10 Patient-Reported Data and Maximizing Patient Value in the Learning Health System, 12 3 Digital Health Data Uses: Leveraging Data for Better Health 15 Introduction, 17 Practice Management, 17 Clinical Research, 19 Translational Informatics, 21 Supporting Public Health and Surveillance at the National Level, 23 Supporting Public Health and Surveillance at the Local Level, 24 xvii

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xviii CONTENTS 4 Issues and Opportunities in the Emergence of Large Health-Related Datasets 27 Introduction, 28 The Challenge of Bias in Large Health-Related Datasets, 28 Moving from Analytics to Insights, 30 5 Innovations Emerging in the Clinical Data Utility 33 Introduction, 34 Distributed Queries, 34 Data Harmonization and Normalization, 36 Data Linkage, 38 6 Strategies Going Forward 41 Current Data Sources: Better Awareness and Assessment, 41 Data Input: Improve Patient Orientation, Quality, and Utility, 42 Data Analysis: Improve Access, Tools, and Capacity, 42 Public and Patient Engagement: Ramp Up Involvement, 43 Building a Clinical Data Learning Utility, 44 Clarity on Governance, 45 Appendixes A Speaker Biographies 47 B Workshop Agenda 57