Capturing Social and
in Electronic Health
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
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NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate 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.
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Suggested citation: IOM (Institute of Medicine). 2014. Capturing social and behavioral domains in electronic health records: Phase 1. Washington, DC: The National Academies Press.
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Willing is not enough; we must do.”
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
Advising the Nation. Improving Health.
THE NATIONAL ACADEMIES
Advisers to the Nation on Science, Engineering, and Medicine
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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
Deidra Crews, Institute of Medicine Gilbert S. Omenn Anniversary Fellow and Assistant Professor of Medicine, Division of Nephrology, Johns Hopkins University, Baltimore, Maryland
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
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,
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.
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 Substance 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 presentations informed committee thinking, including Beverly Brumfield, Alan Glaseroff, Laura Gottlieb, Robert Kahn, Kevin Larsen, Rashanda Lee, Rishi Manchanda, Brigid McCaw, and David McClure. Their contributions 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 sponsors: Association of State and Territorial Health Officials, Blue Shield of California Foundation, California HealthCare Foundation, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services,
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.
Social and Behavioral Health and Psychological Domains
Growing Use of Electronic Health Data and EHRs
Clinical and Patient Use of EHRs
Committee’s Approach to Its Task
2 SELECTION OF DOMAINS FOR CONSIDERATION
Frameworks for Domain Selection
Social and Behavioral Health Domains
Criteria to Be Used for Domain Selection
3 IDENTIFIED CANDIDATE DOMAINS
Social and Behavioral Factors in the Life Course Perspective
Country of Origin/U.S. Born or Non-U.S. Born
Financial Resource Strain: Food and Housing Insecurity
Negative Mood and Affect: Depression and Anxiety
Psychological Assets: Conscientiousness, Patient Activation, Optimism and Self-Efficacy
Social Connections and Social Isolation
Neighborhoods/Communities Compositional Characteristics