Collecting Sexual Orientation and Gender Identity Information
Importance of the Collection and Use of These Data
Many health care providers do not routinely discuss sexual orientation or gender identity (SO/GI) with patients, and many health care facilities have not developed systems to collect structured SO/GI data from all patients. Without this information, lesbian, gay, bisexual, and transgender (LGBT) patients and their specific health care needs cannot be identified, the health disparities they experience cannot be addressed, and the provision of important health care services may not be delivered. Such services include appropriate preventive screenings, assessments of risk for sexually transmitted diseases and HIV, discussions about parenting, and effective interventions for behavioral health concerns that can be related to the experiences of anti-LGBT stigma.1 An opportunity for transgender people to share information about their SO/GI in a welcoming and patient-centered environment opens the door to a more trusting patient–provider relationship.
Collecting SO/GI data in electronic health records (EHRs) is essential to providing high-quality, patient-centered care. SO/GI data collection has been recommended by both the National Academy of Medicine 1,2 and the Joint Commission3 as a way to learn about which populations are being served and to measure the quality of care provided to LGBT people. Some patients may question the relevance of being asked about their sex listed at birth or their sexual orientation. However, providers need this information to recommend appropriate preventive care.3 In addition, sexual orientation and gender identity may be fluid across time and should be reassessed periodically so the most up-to-date information is available in the medical record.
Collecting SO/GI data is essential to providing high-quality, patient-centered care.
Leading experts in LGBT health, such as the organizations listed above, recommend the following questions. These questions are recommended based on testing with rural and urban health centers and other studies of SO/GI data collection, such as research conducted by the Center of Excellence for Transgender Health at the University of California, San Francisco.1,2
|Do you think of yourself as:||
|Do you think of yourself as:||
|What sex was originally listed on your birth certificate?||
Note that the gender identity questions have two parts: one on current gender identity and one on sex listed at birth. Together, these questions replace “Sex: male or female?” on patient information forms and in EHRs. Asking two questions offers a clearer, more clinically relevant representation of transgender patients. For example, asking whether someone is transgender will exclude some transgender people who do not identify as such (e.g., a person who was born male but whose gender identity is female may check “female” rather than “transgender” on a form). The gender identity question also includes options for people who have a non-binary gender identity (people who do not identify as male or female).
In addition to collecting SO/GI data, asking patients to include the name they want their providers to use as well as the correct pronouns to use is also recommended by leading experts in LGBT health (see table below). This is important because many transgender patients have insurance records and identification documents that do not accurately reflect their current name and gender identity. Asking these questions and training the whole health care team to use an individual’s preferred pronouns and name can greatly facilitate patient-centered communication.
|Name and Pronouns|
|What is your name as you would like it to appear on your health records?|
|What is/are your preferred pronouns?||
Collecting SO/GI data is essential to providing high-quality, patient-centered care for transgender people. SO/GI data can be collected in several ways:
1. Information can be obtained through patient portals and transmitted to an individual’s EHR.
2. Questions can be included on registration forms for all patients as part of the demographic section along with information about race, ethnicity, and date of birth.
3. Providers and their care team can ask questions during the patient visit, for instance, as part of a social or sexual-history discussion.
To address the lack of data on sexual orientation and gender identity in health systems, the Department of Health and Human Services’ (HHS) Healthy People 2020external icon included an objective to “increase the number of states, territories, and the District of Columbia that include questions that identify sexual orientation and gender identity on state level surveys or data systems” to improve “the health, safety, and well-being of lesbian, gay, bisexual, and transgender (LGBT) individuals.” Increasing the number of population based data systems which collect standardized data on (or for) lesbian, gay and bisexual populations and on (or for) transgender populations and expanding the availability of sexual orientation/gender identity (SO/GI) statistics has also been a priority for other federal agencies.
SO/GI information can be entered into the EHR by staff or directly by the patient through a patient portal from home or using electronic kiosks or tablets at various points during their visit (when available). Regardless of how the data are collected, it is helpful to ask SO/GI questions periodically because sexual orientation and gender identity can change over time. Some recommend integrating SO/GI questions with data that is checked regularly such as address and insurance changes, while others recommend every six months or once a year. It is important to include this in the clinical workflow. Figure 3 illustrates a sample process for gathering SO/GI data in clinical settings.
Figure 3: Sample Process for Collecting Data From Patients in Clinical Settings
The Health Resources & Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, is requiring all HRSA-funded health centers to collect and report SO/GI data to promote culturally sensitive care delivery and help reduce health disparities.
Although EHR forms and formats will vary, it is critical to collect standardized SO/GI data in all health records, including EHRs. Asking these questions and educating the whole care team on the value of collecting this information can improve patient-centered care. Providers who are informed of their patients’ SO/GI are better able to provide care that is relevant, specific, and compassionate. See below for more information, resources, and training opportunities:
- National Academy of Medicine. The health of lesbian, gay, bisexual, and transgender (LGBT) people: building a foundation for better understanding. Washington, DC: National Academies Press; 2011. Available from: www.nap.edu/catalog.php?record_id=13128external icon
- Deutsch M, Green J, Keatley J, Mayer G, Hastings J, Hall A; the World Professional Association for Transgender Health EMR Working Group. Electronic medical records and the transgender patient: recommendations from the World Professional Association for Transgender Health EMR Working Group. J Am Med Inform Assoc. 2013 Jul-Aug;20(4):700-3.
- Deutsch M, Buchholz D. Electronic health records and transgender patients—practical recommendations for the collection of gender identity data. J Gen Intern Med. 2015 Jun;30(6):843-7.