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Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

Capturing Social and Behavioral
Domains and Measures
in Electronic Health Records

PHASE 2

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

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

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.

International Standard Book Number-13: 978-0-309-31242-4
International Standard Book Number-10: 0-309-31242-6
Library of Congress Control Number: 2014959444

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 behavioral domains and measures in electronic health records: Phase 2. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

Knowing is not enough; we must apply.
Willing is not enough; we must do.
”      

                                                —Goethe

image

INSTITUTE OF MEDICINE
              OF THE NATIONAL ACADEMIES

Advising the Nation. Improving Health.

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

THE NATIONAL ACADEMIES

Advisers to the Nation on Science, Engineering, and Medicine

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 Academy 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 engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is president 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 Institute 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. Victor J. Dzau is president of the Institute of Medicine.

The National Research Council was organized by the National Academy of Sciences 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

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

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

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

Study Fellow

Deidra Crews, IOM Gilbert S. Omenn Anniversary Fellow and Assistant Professor of Medicine, Division of Nephrology, Johns Hopkins University, Baltimore, Maryland

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

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

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:

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

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Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

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.

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

Preface

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.

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

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.

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

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

REFERENCE

Diamond, J. 1994. Guns, germs, and steel: The fates of human society. New York: W.W. Norton & Company.

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
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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, 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

Suggested Citation:"Front Matter." Institute of Medicine. 2014. Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2. Washington, DC: The National Academies Press. doi: 10.17226/18951.
×

(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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Abbreviations and Acronyms

ACA

Patient Protection and Affordable Care Act of 2010

ACES

Adverse Childhood Experiences Study

ACO

accountable care organization

AHRQ

Agency for Healthcare Research and Quality

ARRA

American Recovery and Reinvestment Act of 2009

 
CDC

Centers for Disease Control and Prevention

CMMI

Center for Medicare & Medicaid Innovation

CMS

Centers for Medicare & Medicaid Services

 
EHR

electronic health record

 
GEM

Grid-Enabled Measures [database]

GIS

geographic information system

 
HIE

health information exchange

HIPAA

Health Insurance Portability and Accountability Act of 1996

HITECH

Health Information Technology for Economic and Clinical Health Act of 2009

 
IOM

Institute of Medicine

IT

information technology

 
Page xxii Cite
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LGBT

lesbian, gay, bisexual, and transgender

 
MESA

Multi-Ethnic Study of Atherosclerosis

 
NCQA

National Committee for Quality Assurance

NHANES

National Health and Nutrition Examination Survey

NHIS

National Health Interview Survey

NIH

National Institutes of Health

NIOSH

National Institute for Occupational Safety and Health

NQF

National Quality Forum

 
OBSSR

Office of Behavioral and Social Science Research (of the National Institutes of Health)

OMB

Office of Management and Budget

ONC

Office of the National Coordinator for Health Information Technology

 
PCORI

Patient-Centered Outcomes Research Institute

PHQ

Patient Health Questionnaire

PROMIS

Patient Reported Outcomes Measurement Information System

PTSD

posttraumatic stress disorder

 
SAMHSA

Substance Abuse and Mental Health Services Administration

SBDH

social and behavioral determinants of health

SES

socioeconomic status

SNAP

Supplemental Nutrition Assistance Program

 
USPSTF

U.S. Preventive Services Task Force

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Determinants of health - like physical activity levels and living conditions - have traditionally been the concern of public health and have not been linked closely to clinical practice. However, if standardized social and behavioral data can be incorporated into patient electronic health records (EHRs), those data can provide crucial information about factors that influence health and the effectiveness of treatment. Such information is useful for diagnosis, treatment choices, policy, health care system design, and innovations to improve health outcomes and reduce health care costs.

Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 identifies domains and measures that capture the social determinants of health to inform the development of recommendations for the meaningful use of EHRs. This report is the second part of a two-part study. The Phase 1 report identified 17 domains for inclusion in EHRs. This report pinpoints 12 measures related to 11 of the initial domains and considers the implications of incorporating them into all EHRs. This book includes three chapters from the Phase 1 report in addition to the new Phase 2 material.

Standardized use of EHRs that include social and behavioral domains could provide better patient care, improve population health, and enable more informative research. The recommendations of Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2 will provide valuable information on which to base problem identification, clinical diagnoses, patient treatment, outcomes assessment, and population health measurement.

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