workshop participants heard from several of those who have expertise in this area and who conveyed some of the lessons they have learned in survey settings and other settings. In this chapter, five speakers discuss efforts to design questions for collecting data on sexual orientation and gender identity.


A working definition of the word transgender, said JoAnne Keatley, is a person whose gender identity or gender expression differs from the sex assigned to them at birth. She reiterated a comment made earlier in the workshop that many transgender people do not like to self-identify as transgender, instead wanting to have their affirmed gender recognized without it being connected to their transgender history. She also pointed out the distinction between gender identity—an internal sense of self regarding gender—and sexual orientation, which is a feeling of sexual or romantic attraction to gender or gender expression of other individuals and is not necessarily linked to anatomy. This distinction can cause confusion in health surveys, an example being the case of a man who is in a relationship with a transgender woman often being categorized as a man who has sex with a man when in fact that may not be the perception of that particular individual. In fact, there is a history of the CDC capturing transgender individuals and their partners under the men who have sex with men category.

In Keatley’s opinion, EHRs currently have limitations in the way they represent gender identity. If a transgender person’s sex is listed in terms of anatomy and the only mention of that person’s transgender status is in a provider note, other providers may not go to the notes section of the EHR and the result can be a disconnect that impacts the patient. Another limitation concerns denial of care from insurance coding that has to be gender-specific—if a transgender female is identified as female on an EHR, they may be denied prostate screening. To address these limitations, the Center of Excellence for Transgender Health recommends that transgender-inclusive data be collected using two questions. First, ask about the person’s current gender identity, and then ask for the person’s assigned sex at birth. Asking about current gender identity first honors the patient’s gender expression by allowing the patient to self-identify in their current gender identity. It may be necessary to ask additional questions to specify current anatomy, but that can be done through drop-down menus or through provider questions.

Regarding implementation, the first step is to update the health care system’s data collection forms and databases to include the two-question system. The CDC, Keatley noted, implemented the two-question system

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