On Friday, the U.S. Department of Health and Human Services' Office of Civil Rights moved to roll back protections for transgender people under Section 1557 of the Affordable Care Act, which bans discrimination in healthcare. 

The final rule, which goes into effect 60 days after it was announced, reverses Obama-era expansions of sex-based discrimination under Section 1557 to include gender identity or the desire to obtain an abortion.

On Monday, however, the U.S. Supreme Court ruled that sex-based discrimination at the workplace includes discrimination based on gender identity or sexual orientation.

Though some advocates believe that this will throw the future of the OCR final rule into question, providers worry that LGBTQ patients, especially trans people, will still avoid sharing information about their identities with clinicians out of fear of discrimination. 

This, in turn, could present problems on both an individual and population-wide level.

"Whenever you think that identifying yourself is going to cause problems for you or put you at risk, it creates a culture of fear," said Heather Hitson, SOGI Project Manager at UCLA Health. "It's absolutely what we don't want.

"I'm going to be cautiously optimistic that we're going to be able to reverse that decision," she added, regarding the final rule. "But for now it's going to weigh on our LGBTQ population's minds: Is this safe for me to share?" 

Hitson and her colleague, Dr. Amy Cummings, spoke with Healthcare IT News about their years-long project to include information related to gender identity and sexual orientation in patients' EHRs. 

"I was on the health staff at UCLA back before we had the ability to capture any kind of information about LGBTQ status," said Cummings, the informatics chair of the Equitable Care Committee at UCLA. "I remember realizing how difficult it must be to not have your identity aligned with your electronic health record when you're being cared for."

LGBTQ people, especially trans and gender-nonconforming people, have faced rampant discrimination and misunderstanding in clinical settings. As Cummings and Hitson pointed out, including gender identity in a patient's EHR can improve the patient experience, increase patient retention and recruitment and decrease discrimination. 

By contrast, studies have shown that failing to be identified by the correct name and pronoun can negatively affect patient satisfaction and quality of care.

Cummings pointed out that if a patient doesn't feel comfortable sharing their identity, it could affect that individual's access to the correct preventive health screenings. 

"It makes interpreting labs more difficult," if patients are using hormone replacement therapy, she said. "Both of these issues are serious medical concerns."

From a broader population health perspective, Hitson said, the new HHS rule could also make it more difficult to advance care for the trans community. 

"If we're not collecting data and asking these questions" about transgender people and healthcare, "it's going to delay research," Hitson said. "There's limited research in the healthcare community around trans people, and this is going to increase the barrier."

"We were just getting to the point where we were making meaningful conclusions" about LGBTQ care, added Cummings. "Without being able to identify these communities and what they're facing in a rigorously statistical way, it's going to hamper our ability to care for this population."

Hitson noted that healthcare discrimination is particularly harmful for trans people of color, who can experience both transphobia and racism. She pointed to the recent murders of black trans women Riah Milton in Ohio and Dominique "Rem’Mie" Fells in Pennsylvania as evidence of the greater dangers trans women of color face. 

"People go to their healthcare provider thinking it may be a safe place, but it may not be," said Hitson. 

Hitson and Cummings said that providers can demonstrate their solidarity with the LGBTQ community by being visibly supportive of their community through statements on websites and in-office paraphernalia.  

Another way, said Hitson, would be to ask questions around sexual orientation and gender identity in a private place, such as a patient portal.

"I think that's a good cue or visual indicator that their doctor is affirming and this is important," she said. 

They also urged IT professionals to consider which parts of patient records are shared with other – potentially LGBTQ-unfriendly – organizations. Their Epic build, for example, decouples name, pronouns, organ inventory and other information from patients' sexual orientation and gender identity.

"People need to think about the impacts of sharing information, even across state lines," said Hitson. 

Ultimately, Cummings said, the OCR final rule should not interfere with providers trying to provide patients with the best possible care. 

"Protecting LGBTQ patients is always going to be a priority," she said.

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich