Lesbian, gay, and bisexual patients worry, often with reason she said, that they will be treated differently if their sexual orientation is known. They may even delay and avoid care because of how they feel they will be treated, not just by physicians, but by the nurses, the allied health professions, and other facility employees. “So it isn’t just a question of, ‘Are my data going to be held confidentially in the research phase or in the EHR?’” said Snowdon. “It is, ‘I don’t even want you to ask me unless I volunteer it.’” This concern is especially prevalent, she added, in the 29 states in which lesbian, gay, and bisexual people do not have legal protections.

Only 26 percent of facilities record sexual orientation in print or in an EHR, and no general health facilities record sexual orientation in an EHR using a drop-down option. Instead, the patient will note their sexual orientation on a print form or the provider will enter the patient’s sexual orientation in print or electronic notes. In contrast to same sex partnership and transgender status, which patients often want to volunteer, no general health facility reported patient requests to indicate sexual orientation at admitting or registration.

On the basis of these findings, Snowdon made the following recommendations:

  • Explore not only the phrasing of sexual orientation questions and confidentiality of data in research but also who will be asking those questions, what training will those asking the questions receive, in what context will they ask the questions, and to what extent will the information be available within the health care system.
  • Convene diverse groups of patients to discuss their concerns because they are likely to differ substantially by gender, age, income, race and ethnicity, and health condition.
  • If routine sexual orientation questioning is incentivized or otherwise encouraged, it will be essential to provide widespread patient education and empowerment activities, to require facilities to have meaningful nondiscrimination policies and staff training in place, and to teach health care providers in a systematic way how to discuss sexual orientation sensitively with patients.

Concerning this last point, Snowdon said it would be interesting to see an initiative from CMS that would require LGBT nondiscrimination policies to go hand-in-hand with incentivizing data collection. As a final note, Snowdon said that EHRs need to be modified, both by vendors and facilities, so that LGBT patients can always, if they wish, ask that information on same-sex partnership, transgender status, and sexual orientation be recorded. In doing so, however, it is essential to remember that a patient’s desire to volunteer that data can vary tremendously.

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement