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1 1 Introduction and Overview In 2011, the Institute of Medicine (IOM) released the report The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding, the first comprehensive compilation of what is known about the health of each of these groups at different stages of life. This report also outlined an agenda for the research and data collection necessary to form a fuller understanding of this subject. One of the recommendations in this report was that, provided that privacy concerns could be adequately addressed, information on patients’ sexual orientation and gender identity2 should be collected in electronic health records, just as information on race and ethnicity is routinely c ollected. Such data are essential because demographics provide the foundation for understanding any population’s status and needs. This recommendation recognized that the possible discomfort on the part of health care workers asking questions about sexual orientation and gen- der identity, a lack of knowledge by providers about how to elicit this 1 The planning committee’s role was limited to planning the workshop, and the workshop summary has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants, and are not necessarily endorsed or verified by the Institute of Medicine, and they should not be construed as reflecting any group consensus. 2 In the 2011 Institute of Medicine report, sexual orientation was “conceptualized in terms of sexual attraction, behavior, identity, or some combination of these dimensions” (p. 12). Gender identity was defined using the Bockting (1999) definition as “one’s basic sense of being a man, woman, or other gender (such as transgender)” (IOM, 2011, p. 318). 1
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2 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA BOX 1-1 Statement of Task An ad hoc committee will plan and conduct a public workshop on collect- ing exual orientation and gender identity data in electronic health records. The s workshop will feature invited presentations and facilitated discussions about cur- rent practices around sexual orientation and gender identity data collection, the challenges in collecting these data, and ways in which these challenges can be overcome. Areas of focus for the workshop will include the clinical rationale behind col- lecting these data, standardized questions that can be used to collect these data, mechanisms for supporting providers and patients in the collection of these data, technical specifications involved in creating standards for sexual orienta- tion and gender identity data collection and exchange, and policy considerations related to the Health Information Technology (HIT) Meaningful Use process being overseen by the Department of Health and Human Services (HHS). The committee will develop the workshop agenda, select invited speakers and discussants, and moderate the discussions. Invited participants will include lesbian, gay, bisexual, and transgender (LGBT) health care consumer advocates, providers with experience working with LGBT populations, HIT vendors and other HIT specialists, health care administrators, and policy makers. A workshop sum- mary will be prepared by a designated rapporteur in accordance with National Research Council policies and procedures. information, and some hesitancy on the part of patients to disclose this information may be barriers to the collection of meaningful data on sexual orientation and gender identity. As the next step in exploring this recommendation, an ad hoc com- mittee was assembled to plan and conduct a public workshop on col- lecting sexual orientation and gender identity data in electronic health records (see Box 1-1). The workshop, held on October 12, 2012, featured invited presentations and facilitated discussions about current practices around sexual orientation and gender identity data collection, the chal- lenges in collecting these data, and ways in which these challenges can be overcome. ABOUT THIS SUMMARY This document was prepared by rapporteurs Joe Alper, Monica N. Feit, and Jon Q. Sanders for the Board on the Health of Select Popula- tions of the Institute of Medicine (IOM) as a factual summary of what occurred at the workshop Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records. The workshop speakers and
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INTRODUCTION AND OVERVIEW 3 presentation topics were selected to cover a range of important issues in data collection on sexual orientation and gender identity for inclusion in an electronic health record. However, it was impossible to include all potential topics during the course of a 1-day workshop, and speakers could not exhaustively cover all relevant findings and issues for each topic in their presentations. Consequently, some relevant topics could not be included in the workshop and, by extension, are not included in this workshop summary. In accordance with the policies of the IOM, the sum- mary does not attempt to establish any conclusions or recommendations about needs and future directions, focusing instead on issues identified by the speakers and workshop participants. Whenever possible, ideas presented at the workshop are attributed to the individual who expressed them. Any opinions, conclusions, or recommendations discussed in this workshop summary are solely those of the individual participants and should not be construed as reflecting consensus or endorsement by the workshop, the Board on the Health of Select Populations, the Institute of Medicine, or the National Academies. The workshop agenda is in Appendix A, a list of registered participants is in Appendix B, and biographical sketches of the workshop speakers are in Appendix C. The 19 presentations at the workshop are divided into 5 chapters following this introductory chapter. (For clarity, the presentations have been somewhat reorganized from the agenda.) Chapter 2 discusses the clinical reasons to collect data on sexual orientation and gender identity, both from a population perspective and as it applies to an individual’s health care. This chapter also presents some compelling personal stories illustrating the barriers and discrimination that lesbian, gay, bisexual, and transgender (LGBT) people experience in the health care system. Chapter 3 examines the role that the federal government is playing in developing methods for collecting sexual orientation and gender identity data in electronic health records and ensuring that these methods protect patient privacy and confidentiality. Chapter 4 describes the experiences of several health care systems in developing and implementing questions on sexual orientation and gender identity and incorporating the data in electronic health records. Chapter 5 examines the issues involved in developing standardized questions for collecting data on sexual orienta- tion and gender identity and provides examples of questions that have been field-tested and deployed in actual clinical settings. Chapter 6 pro- vides comments from participants and the workshop organizing commit- tee chair’s final observations on themes that arose during the workshop.
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