Collecting Sexual Orientation
and Gender Identity Data
in Electronic Health Records
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
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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, California, under grant number 17133. The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for this activity.
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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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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
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.
This workshop summary 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 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 integrity 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 Evaluation, Department of Health and Human Services
David Vawdrey, Columbia University
Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by Hugh Tilson, University of North Carolina at Chapel Hill. Appointed by the Institute of Medicine, he was responsible
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.
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 Erdtmann, Hannan Braun, and Colin Fink. Joe Alper, the 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 discussions throughout the day. Finally, we thank the sponsors of the workshop: The California Endowment, the California HealthCare Foundation, based in Oakland, California, and the National Institutes of Health. The workshop would not have been possible without their generous support.
2 CLINICAL RATIONALE FOR COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA
Supporting Patients in the Collection of Data
3 FEDERAL PERSPECTIVE ON THE USE OF ELECTRONIC HEALTH RECORDS TO COLLECT SEXUAL ORIENTATION AND GENDER IDENTITY DATA
Efforts at the Department of Health and Human Services
The View from the Centers for Medicare & Medicaid Services
Health Resources and Services Administration Perspective
Confidentiality, Privacy, and the Health Insurance Portability and Accountability Act
4 EXISTING DATA COLLECTION PRACTICES IN CLINICAL SETTINGS
Patient Self-Identification in Electronic Health Records
The Kaiser Permanente Experience
The Vanderbilt University Experience
Supporting Providers in the Collection of Data
5 DEVELOPING AND IMPLEMENTING QUESTIONS FOR COLLECTING DATA ON SEXUAL ORIENTATION AND GENDER IDENTITY
Gender Identity Data Collection
Developing a “Perfect” Sexual Identity Measure
Assessing Sexual Identity and Behavior in California’s Diverse Population
Sexual Orientation and Gender Identity in the Electronic Health Record: A User and Vendor Perspective
B Registered Workshop Attendees
|AHA||American Hospital Association|
|AHRQ||Agency for Healthcare Research and Quality|
Centers for Disease Control and Prevention
|CHIS||California Health Information Survey|
|CMS||Centers for Medicare & Medicaid Services|
electronic health record
female to male transgender
Healthcare Equality Index
|HHS||Department of Health and Human Services|
|HIPAA||Health Insurance Portability and Accountability Act|
|HIT||Health Information Technology|
Health Information Technology for Economic and Clinical Health
|HIV||human immunodeficiency virus|
|HRSA||Health Resources and Services Administration|
Institute of Medicine