Excerpt

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 identity should be collected in electronic health records, just as information on race and ethnicity is routinely collected. 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 gender identity, a lack of knowledge by providers about how to elicit this 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.

Contents

• THE NATIONAL ACADEMIES
• PLANNING COMMITTEE ON COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA IN ELECTRONIC HEALTH RECORDS
• Reviewers
• Acknowledgments
• Acronyms
• 1. Introduction and Overview
  • ABOUT THIS SUMMARY
• 2. Clinical Rationale for Collecting Sexual Orientation and Gender Identity Data
  • ACCESS TO CARE
  • THE IMPACT ON QUALITY OF CARE
  • SUPPORTING PATIENTS IN THE COLLECTION OF DATA
  • DISCUSSION
• 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
  • DISCUSSION
• 4. Existing Data Collection Practices in Clinical Settings
  • PATIENT SELF-IDENTIFICATION IN ELECTRONIC HEALTH RECORDS
  • THE MAYO CLINIC EXPERIENCE
  • THE KAISER PERMANENTE EXPERIENCE
  • THE FENWAY HEALTH EXPERIENCE
  • THE VANDERBILT UNIVERSITY EXPERIENCE
  • SUPPORTING PROVIDERS IN THE COLLECTION OF DATA
  • DISCUSSION
• 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
  • DISCUSSION
• 6. Closing Remarks
• References
• APPENDIXES
  • Appendix A Workshop Agenda
  • Appendix B Registered Workshop Attendees
  • Appendix C Biographical Sketches of Workshop Speakers

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

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.

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.

The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for this activity.

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.