Capturing Social and
Behavioral Domains
in Electronic Health
Records

PHASE 1

Committee on the Recommended Social and Behavioral Domains and
Measures for Electronic Health Records

Board on Population Health and Public Health Practice

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu



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Capturing Social and Behavioral Domains in Electronic Health Records PHASE 1 Committee on the Recommended Social and Behavioral Domains and Measures for Electronic Health Records Board on Population Health and Public Health Practice

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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 No. 16019-7, 55 between the National Academy of Sciences and the Association of State and Territorial Health Officials, Contract No. 11796053 between the National Academy of Sciences and Blue Shield of California Foundation, Contract No. 18012 between the National Academy of Sciences and California HealthCare Foundation, Contract No. HHSM-500-2013- 00236P between the National Academy of Sciences and Centers for Medicare & Medicaid Services, unnumbered contract between the National Academy of Sciences and The Lisa and John Pritzker Family Fund, Contract No. HHSN2632012000741 TO #27 between the National Academy of Sciences and National Institutes of Health, Contract No. 70657 between the National Academy of Sciences and the Robert Wood Johnson Foundation, and Contract No. HHSP233201300249P between the National Academy of Sciences and the Substance Abuse Mental Health Services Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. International Standard Book Number-13:  978-0-309-30110-7 International Standard Book Number-10:  0-309-30110-6 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. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2014 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 adopted 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). 2014. Capturing social and behav- ioral domains in electronic health records: Phase 1. 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 engineers. 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. C. D. Mote, Jr., 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 Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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COMMITTEE ON THE RECOMMENDED SOCIAL AND BEHAVIORAL DOMAINS AND MEASURES FOR ELECTRONIC HEALTH RECORDS Nancy E. Adler (Co-Chair), Professor, Departments of Psychiatry and Pediatrics, and Director of the Center for Health and Community, University of California, San Francisco William W. Stead (Co-Chair), Professor, Departments of Biomedical Informatics and Medicine, and Director, Informatics Center at Vanderbilt University, Nashville, Tennessee Kirsten Bibbins-Domingo, Professor of Medicine, Epidemiology, and Biostatistics, and Director, Center for Vulnerable Populations, San Francisco General Hospital, California Patricia Flatley Brennan, Professor, Department of Industrial and Systems Engineering, and Professor of Nursing, University of Wisconsin, Madison Ana Diez-Roux, Dean, Drexel University School of Public Health, Philadelphia, Pennsylvania Christopher Forrest, Professor, Departments of Pediatrics and Health Care Management, University of Pennsylvania and Children’s Hospital of Philadelphia James S. House, Professor, Survey Research, Public Policy, and Sociology, University of Michigan, Ann Arbor George Hripcsak, Chair, Department of Biomedical Informatics, Columbia University, and Director, Medical Informatics Services for New York- Presbyterian Hospital/Columbia Campus, New York Mitchell H. Katz, Director, Los Angeles Department of Health, California Eric B. Larson, Executive Director and Vice President for Research, Group Health Research Institute, Seattle, Washington Karen A. Matthews, Professor, Departments of Epidemiology, Psychology, and Psychiatry, University of Pittsburgh, Pennsylvania David Ross, Director, Public Health Informatics Institute, Atlanta, Georgia David R. Williams, Professor, Departments of Public Health, African and African American Studies, and Sociology, Harvard University, Boston, Massachusetts Study Fellow Deidra Crews, Institute of Medicine Gilbert S. Omenn Anniversary Fellow and Assistant Professor of Medicine, Division of Nephrology, Johns Hopkins University, Baltimore, Maryland v

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IOM Staff Karen Helsing, Study Director Alejandra Martín, Research Associate Emily Vollbrecht, Senior Program Assistant Doris Romero, Financial Associate Rose Marie Martinez, Senior Director, Board on Population Health and Public Health Practice vi

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Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance 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 report as sound as possible and to ensure that the report 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 deliberative process. We wish to thank the following individuals for their review of this report: George J. Isham, Health Partners, Inc. Kenneth W. Kizer, University of California, Davis Michael Lesk, Rutgers, the State University of New Jersey Tracy Lieu, Kaiser Permanente Northern California Bruce G. Link, Columbia University James M. Mold, University of Oklahoma Health Science Center Martin Jose Sepúlveda, IBM Corporation Antonia M. Villarruel, University of Michigan School of Nursing Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Robert S. Lawrence, vii

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viii REVIEWERS Center for a Livable Future, John Hopkins Bloomberg School of Public Health, and Susan J. Curry, College of Public Health, University of Iowa. Appointed by the National Research Council and the Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Acknowledgments Many individuals generously shared their insights and expertise with the committee during the course of the deliberations leading to this report. In particular, the committee thanks Robert M. Kaplan, director of the Office of Behavioral and Social Sciences Research at the National Institutes of Health, for his support and vision behind this study. Further thanks go to the representatives of the sponsor agencies who addressed the committee and helped clarify its charge. These include Maureen Boyle from the Sub- stance Abuse and Mental Health Services Administration, Robert Hahn at the Centers for Disease Control and Prevention, James Marks of the Robert Wood Johnson Foundation, Lisa and John Pritzker from The Lisa and John Pritzker Family Fund, and William Riley at the National Cancer Institute. The committee also greatly appreciates the input of speakers whose pre- sentations informed committee thinking, including Beverly Brumfield, Alan Glaseroff, Laura Gottlieb, Robert Kahn, Kevin Larsen, Rashanda Lee, Rishi Manchanda, Brigid McCaw, and David McClure. Their contribu- tions invigorated committee deliberations and enhanced the quality of this report. We also extend our deepest thanks to Deidra Crews, the Institute of Medicine’s (IOM’s) 2013–2015 Gilbert S. Omenn Anniversary Fellow, for her numerous contributions to the committee’s work. Finally, the committee acknowledges the study’s multiple spon- sors: Association of State and Territorial Health Officials, Blue Shield of California Foundation, California HealthCare Foundation, Centers for Dis- ease Control and Prevention, Centers for Medicare & Medicaid Services, ix

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x ACKNOWLEDGMENTS The Lisa and John Pritzker Family Fund, National Institutes of Health, the Robert Wood Johnson Foundation, and the Substance Abuse and Mental Health Services Administration. The committee and the IOM staff thank them for their support.

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Contents SUMMARY 1 1 INTRODUCTION 9 Social and Behavioral Health and Psychological Domains, 9 Growing Use of Electronic Health Data and EHRs, 12 Defining the EHR System, 12 Clinical and Patient Use of EHRs, 14 Public Health Uses of EHRs, 16 Research Uses of EHRs, 18 Meaningful Use in EHRs, 19 Charge to the Committee, 21 Committee’s Approach to Its Task, 22 Organization of the Report, 24 References, 25 2 SELECTION OF DOMAINS FOR CONSIDERATION 29 Frameworks for Domain Selection, 30 Social and Behavioral Health Domains, 34 Criteria to Be Used for Domain Selection, 35 References, 39 3 IDENTIFIED CANDIDATE DOMAINS 41 Life Course Perspective, 42 Gender, 42 Race and Ethnicity, 43 xi

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xii CONTENTS Social and Behavioral Factors in the Life Course Perspective, 44 Domains, 45 Sexual Orientation, 47 Race and Ethnicity, 49 Country of Origin/U.S. Born or Non-U.S. Born, 52 Education, 54 Employment, 56 Financial Resource Strain: Food and Housing Insecurity, 58 Health Literacy, 60 Stress, 62 Negative Mood and Affect: Depression and Anxiety, 64 Psychological Assets: Conscientiousness, Patient Activation, Optimism and Self-Efficacy, 67 Dietary Patterns, 71 Physical Activity, 73 Tobacco Use and Exposure, 75 Alcohol Use, 78 Social Connections and Social Isolation, 80 Exposure to Violence, 84 Neighborhoods/Communities Compositional Characteristics, 87 Domains Not Included, 90 References, 91 APPENDIXES A Agendas of Public Meetings 113 B Committee Biographies 117