Capturing Social and Behavioral
Domains and Measures
in Electronic Health Records
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
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 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 the Blue Shield of California Foundation, Contract No. 18012 between the National Academy of Sciences and the California HealthCare Foundation, Contract No. HHSM-500-2013-00236P between the National Academy of Sciences and the Centers for Medicare & Medicaid Services, Contract No. VA701-14-P-0066 between the National Academy of Sciences and the Department of Veterans Affairs, 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 the 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 and 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 and measures in electronic health records: Phase 2. 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), McKesson Foundation Professor, Departments of Biomedical Informatics and Medicine, Chief Strategy Officer and Associate Vice Chancellor for Health Affairs, Vanderbilt University, Nashville, Tennessee
Kirsten Bibbins-Domingo, Professor of Medicine, Epidemiology, and Biostatistics, University of California, San Francisco, and Director, Center for Vulnerable Populations, San Francisco General Hospital
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, Pennsylvania
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 County Department of Health Services, 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, IOM 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:
Karen S. Cook, Stanford University
Paul K. Crane, University of Washington
George J. Isham, Health Partners, Inc.
Kenneth W. Kizer, University of California, Davis
Michael Lesk, Rutgers, the State University of New Jersey
Anna C. Mastroianni, University of Washington School of Law
James M. Mold, University of Oklahoma Health Science Center
Barbara K. Rimer, University of North Carolina at Chapel Hill
Martín José 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, Johns 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.
Substantial empirical evidence of the contribution of social and behavioral factors to functional status and the onset, progression, and effective treatment of disease has accumulated over the past 4 decades. Yet efforts to improve health care, advance population and public health, and develop and apply social and behavioral research remain largely separate from one another. The Patient Protection and Affordable Care Act1 and the move toward accountable care organizations provide impetus for creating policy and business frameworks for coordinated action, with electronic health records (EHRs) as a unifying “nervous system.”
This committee was charged with recommending what social and behavioral information should be included in EHRs and identifying obstacles to the inclusion of such information and ways to overcome those obstacles. The inclusion and use of such data in an EHR should foster better clinical care of individual patients and of populations and enable more informative research on the determinants of health and the effectiveness of treatments. Committee members reflecting different perspectives, disciplines, and concerns grappled with how to create a coordinated approach that would maximize the chances achieving these outcomes.
By bringing together social and behavioral scientists with clinical and public health practitioners and information technology (IT) experts, the committee forged a new understanding of different frames of thinking. Not surprisingly, the social and behavioral scientists were most focused on domains and measures that had been shown in the research literature
1 Public Law 111-148.
to be linked to health or longevity, while the clinicians and practitioners were more concerned with the implications of collecting the information, including how it could be used and the burden of collecting and storing it. Similarly, the committee gained an appreciation for different uses of words. For example, the terms standard metric and domain had different meaning for IT members than for social science members. During discussions, the committee often stopped to agree on definitions of the terms being used before going on to reach agreement on judgments of specific domains or measures. Readers of the report may find it helpful to read the sections that clarify the committee’s use of key terms.
In its deliberations, the committee broke new ground in several ways that go beyond the usefulness of its specific findings and recommendations. This report provides a concrete approach to including social and behavioral determinants of health in the clinical context to increase clinical awareness of the patient’s state, broadly considered, and to connect clinical, public health, and community resources to work in concert. The committee emphasizes the standard measures that are ready for widespread use and describe how, as a parsimonious panel, these measures can provide an initial understanding of social and behavioral determinants of health. This approach fosters interoperability as a starting point. We expanded the concept of a standard metric from a research method to a clinical approach to supporting interoperability among measures of a concept to accommodate changes over time and among populations.
Perhaps as important as the measures that the committee recommends to constitute the “psychosocial vital signs” to be gathered in all EHRs are the measures that were not included in the panel. Reflecting on the decision process calls to mind the Anna Karenina Principle, posited by Jared Diamond from the opening line of this Leo Tolstoy classic: “Happy families are all alike; every unhappy family is unhappy in their own way” (Diamond, 1994, p. 157). Diamond observes that successful programs or projects must succeed on all aspects of the undertaking, while less successful outcomes may result from any one of a multitude of problems or limitations.
The Anna Karenina Principle was demonstrated in the deliberations of our committee. The measures recommended for inclusion all scored well on all six criteria. All are standard, available measures of domains that are related to health outcomes and provide useful information, are feasible to measure, and are neither overly sensitive to ask nor available from other sources. The measures that were not recommended had specific qualities that resulted in their being given a lower priority for inclusion at this time. While the nature and extent of shortcomings varied from measure to measure, most involved gaps between the importance of domains to health and the usefulness of the associated measure for clinical care and population management. Identifying these gaps may help to guide needed research.
A number of the measures that were not included in the final panel of recommended measures had no major deficiencies. Their lack of inclusion at this time reflected the committee’s belief that we needed as parsimonious a panel as possible to reduce barriers to the adoption and use of these measures. They are good candidates for inclusion by systems that want greater depth in addressing social and behavioral determinants of health and/or for inclusion in all EHRs in the next round of additions. Finally, the committee also realized that its recommendations are only a starting point. We learned of a number of current efforts to address the gaps of existing measures. While these were not far enough along to provide the kind of evidence needed to support a recommendation, some may achieve this within the next few years. Thus, the committee’s final recommendation proposes a mechanism by which such advances can be evaluated and inform expansion of the core panel when justified. By expanding the number and quality of measures that can inform better, more comprehensive health care, the nation can expand the number of healthy people.
Nancy E. Adler, Co-Chair
William W. Stead, Co-Chair
Committee on the Recommended Social and Behavioral Domains and
Measures for Electronic Health Records
Diamond, J. 1994. Guns, germs, and steel: The fates of human society. New York: W.W. Norton & Company.
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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, former director of the Office of Behavioral and Social Sciences Research at the National Institutes for Health, currently the Chief Science Officer for the Agency for Healthcare Research and Quality, 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 William Riley at the National Cancer Institute, 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, and Lisa and John Pritzker from The Lisa and John Pritzker Family Fund. The committee also greatly appreciates the input of speakers whose presentations informed committee thinking, including Beverly Brumfield, Michael Buck, Neil Calman, Paul Crane, Art Davidson, Richard Gershon, Alan Glaseroff, Laura Gottlieb, Shaun Grannis, Ron Hays, Robert Kahn, Kevin Larsen, Rashanda Lee, Rishi Manchanda, Brigid McCaw, David McClure, Deven McGraw, Abigail Sears, Paul Tang, Karen Tirozzi, Charlene Underwood, and William Yasnoff. Their contributions invigorated committee deliberations and enhanced the quality of this report. In particular, the committee was informed about privacy protection issues with Deven McGraw’s commissioned paper, which she presented to the committee; her paper is printed in its entirety in Appendix B. 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: the Association of State and Territorial Health Officials, the Blue Shield of California Foundation, the California HealthCare Foundation, the Centers for Disease Control and Prevention, the Centers for Medicare & Medicaid Services, the Department of Veterans Affairs, The Lisa and John Pritzker Family Fund, the 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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Patient Protection and Affordable Care Act of 2010
Adverse Childhood Experiences Study
accountable care organization
Agency for Healthcare Research and Quality
American Recovery and Reinvestment Act of 2009
Centers for Disease Control and Prevention
Center for Medicare & Medicaid Innovation
Centers for Medicare & Medicaid Services
electronic health record
Grid-Enabled Measures [database]
geographic information system
health information exchange
Health Insurance Portability and Accountability Act of 1996
Health Information Technology for Economic and Clinical Health Act of 2009
Institute of Medicine
lesbian, gay, bisexual, and transgender
Multi-Ethnic Study of Atherosclerosis
National Committee for Quality Assurance
National Health and Nutrition Examination Survey
National Health Interview Survey
National Institutes of Health
National Institute for Occupational Safety and Health
National Quality Forum
Office of Behavioral and Social Science Research (of the National Institutes of Health)
Office of Management and Budget
Office of the National Coordinator for Health Information Technology
Patient-Centered Outcomes Research Institute
Patient Health Questionnaire
Patient Reported Outcomes Measurement Information System
posttraumatic stress disorder
Substance Abuse and Mental Health Services Administration
social and behavioral determinants of health
Supplemental Nutrition Assistance Program
U.S. Preventive Services Task Force