Evaluating the National Academy of Science Engineering and Medicine's recommended sexual orientation and gender identity questions: community perceptions.

PURPOSE: The National Academy of Science Engineering and Medicine (NASEM) developed items to collect sexual orientation and gender identity (SOGI) in healthcare settings to harmonize collection of these data and address disparities often experienced by sexual and gender minorities (SGM) (LGBTQAI+). This study tested wording of SOGI items among the SGM Community.

METHODS

Individuals were recruited to participate in an interview about the NASEM SOGI items. Eligible participants identified as SGM, lived within the catchment area of an NYC academic medical center, had a history of cancer, or were caregivers of a person with cancer. Interviews were audio-recorded, transcribed, and qualitatively coded.

RESULTS

Thirty-eight SGM individuals participated. The majority disliked the options for sexual orientation (SO) and gender identity (GI) but did find one they would choose. For SO, participants thought options like queer, pansexual, and asexual were missing, and for GI, participants said non-binary and transgender category (transgender man, transgender woman) were needed. Half said they had no concerns about disclosing SOGI information on medical intake forms and others reported preferring knowing why it was needed and who would have access. Several expressed worry about their safety upon disclosure of SOGI. Respondents cited being less likely to disclose SOGI if there was an offensive question on intake form (e.g., spouse instead of partner) or if there were no privacy assurances. Almost all expected reported SOGI to be reflected in their oncology healthcare.

CONCLUSIONS

The NASEM questions need improvement. To improve trust and encourage disclosure, clinicians and clinics should improve the options for SOGI data collection and take steps to ensure privacy is addressed.