Collecting Sexual Orientation
and Gender Identity Data
in Electronic Health Records

Workshop Summary

Joe Alper, Monica N. Feit, and Jon Q. Sanders, Rapporteurs

Board on the Health of Select Populations

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

www.nap.edu



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Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records Workshop Summary Joe Alper, Monica N. Feit, and Jon Q. Sanders, Rapporteurs Board on the Health of Select Populations

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THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 NOTICE: The workshop that is the subject of this workshop summary 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. This activity by the National Academy of Sciences was supported in part by the National Institutes of Health under Contract Number HHSN263201200074I, with additional support from The California Endowment under grant number 20121371, and the California HealthCare Foundation, based in Oakland, Califor- nia, under grant number 17133. The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided sup- port for this activity. International Standard Book Number-13:  978-0-309-26804-2 International Standard Book Number-10:  0-309-26804-4 Additional copies of this report are available 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 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 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). 2013. Collecting sexual orientation and gender identity data in electronic health records: 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 Academy has a mandate that requires it to advise the federal govern- ment 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 mem- bers, sharing with the National Academy of Sciences the responsibility for advis- ing 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. Charles M. Vest 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. Harvey V. Fineberg 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 fed- eral 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 engineer- ing communities. The Council 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 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA IN ELECTRONIC HEALTH RECORDS1 IGNATIUS BAU (Chair), Independent Health Policy Consultant, San Francisco, California NANCY BATES, Senior Researcher for Survey Methodology at the U.S. Census Bureau, Washington, DC DANIEL KASPRZYK, Vice President and Director, Center for Excellence in Survey Research, NORC at the University of Chicago, Bethesda, Maryland HARVEY J. MAKADON, Clinical Professor of Medicine at Harvard Medical School and Director of the LGBT Health Education Center at the Fenway Institute, Boston, Massachusetts IOM Staff MONICA N. FEIT, Senior Program Officer JON Q. SANDERS, Program Associate ANDREA COHEN, Financial Associate FREDERICK (RICK) ERDTMANN, Director, Board on the Health of Select Populations 1 Institute of Medicine planning committees are solely responsible for organizing the workshop, 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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Reviewers This workshop summary has been reviewed in draft form by indi- viduals 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 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 integ- rity of the process. We wish to thank the following individuals for their review of this workshop summary: Leslie Calman, Mautner Project: The National Lesbian Health Organization Kevin Johnson, Vanderbilt University Medical Center Susan Queen, Office of the Assistant Secretary for Planning and E ­ valuation, Department of Health and Human Services David Vawdrey, Columbia University Although the reviewers listed above have provided many construc- tive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop sum- mary was overseen by Hugh Tilson, University of North Carolina at Chapel Hill. Appointed by the Institute of Medicine, he was responsible vii

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viii REVIEWERS 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 rapporteurs and the institution.

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Acknowledgments Many individuals were responsible for organizing the workshop and producing this summary. The planning committee would like to thank Institute of Medicine staff members Monica Feit, Jon Sanders, Andrea Cohen, Rick ­ rdtmann, Hannan Braun, and Colin Fink. Joe Alper, the E lead rapporteur, deserves special acknowledgment for writing the first draft of this summary. We also thank the speakers and participants of the workshop who lent their insights to the topic and contributed to the dis- cussions throughout the day. Finally, we thank the sponsors of the work- shop: The California Endowment, the Cali­ ornia HealthCare Foundation, f based in Oakland, California, and the National Institutes of Health. The workshop would not have been possible without their generous support. ix

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Contents ACRONYMS xiii 1 INTRODUCTION AND OVERVIEW 1 About This Summary, 2 2 CLINICAL RATIONALE FOR COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA 5 Access to Care, 7 The Impact on Quality of Care, 8 Supporting Patients in the Collection of Data, 9 Discussion, 13 3 FEDERAL PERSPECTIVE ON THE USE OF ELECTRONIC HEALTH RECORDS TO COLLECT SEXUAL ORIENTATION AND GENDER IDENTITY DATA 15 Efforts at the Department of Health and Human Services, 16 The View from the Centers for Medicare & Medicaid Services, 17 Health Resources and Services Administration Perspective, 18 Confidentiality, Privacy, and the Health Insurance Portability and Accountability Act, 21 Discussion, 23 xi

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xii CONTENTS 4 EXISTING DATA COLLECTION PRACTICES IN CLINICAL SETTINGS 25 Patient Self-Identification in Electronic Health Records, 26 The Mayo Clinic Experience, 29 The Kaiser Permanente Experience, 30 The Fenway Health Experience, 31 The Vanderbilt University Experience, 33 Supporting Providers in the Collection of Data, 35 Discussion, 36 5 DEVELOPING AND IMPLEMENTING QUESTIONS FOR COLLECTING DATA ON SEXUAL ORIENTATION AND GENDER IDENTITY 39 Gender Identity Data Collection, 40 Developing a “Perfect” Sexual Identity Measure, 41 Assessing Sexual Identity and Behavior in California’s Diverse Population, 42 Sexual Orientation and Gender Identity in the Electronic Health Record: A User and Vendor Perspective, 45 Discussion, 47 6 CLOSING REMARKS 51 REFERENCES 53 APPENDIXES A Workshop Agenda 55 B Registered Workshop Attendees 59 C Biographical Sketches of Workshop Speakers 63

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Acronyms AHA American Hospital Association AHRQ Agency for Healthcare Research and Quality CDC Centers for Disease Control and Prevention CHIS California Health Information Survey CMS Centers for Medicare & Medicaid Services EHR electronic health record FTM female to male transgender GI gender identity HEI Healthcare Equality Index HHS Department of Health and Human Services HIPAA Health Insurance Portability and Accountability Act HIT Health Information Technology HITECH Health Information Technology for Economic and Clinical Health HIV human immunodeficiency virus HRSA Health Resources and Services Administration IOM Institute of Medicine xiii

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xiv ACRONYMS LGBT lesbian, gay, bisexual, and transgender MTF male to female transgender NCHS National Center for Health Statistics NHANES National Health and Nutrition Examination Survey NHIS National Health Information Survey NSFG National Survey of Family Growth OIPDA Office of Information Products and Data Analysis ONC Office of the National Coordinator for Health Information Technology SAMHSA Substance Abuse and Mental Health Services Administration SO sexual orientation