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 summary 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 orientation and gender identity and provides examples of questions that have been field-tested and deployed in actual clinical settings. Chapter 6 provides comments from participants and the workshop organizing committee chair’s final observations on themes that arose during the workshop.