'Devil is in the Details' When Collecting Patient Data on Sexual Orientation, Gender Identity

When collecting data on patients’ sexual orientation and gender identity, the challenging part is that the devil is in the details, explained Maya Leiva, PharmD, BCOP, during a presentation at the HOPA Annual Conference 2023. Leiva explained further that what is key to creating a safe environment when collecting information from patients on sexual orientation and gender identity is practicing the use of language that helps normalize those conversations.

When patients don’t feel safe, it can become much more difficult for them to disclose personal information, such as gender identity or sexual orientation, according to a presentation at the HOPA Annual Conference 2023. Credit: master1305 - stock.adobe.com.

“To be honest with you, when I came out 22 years ago, I thought I was going to have to come out once to my parents. I have discovered now that I come out all the time,” Leiva said. “I didn't realize that daily disclosure was going to feel different in different settings. So it's one thing to kind of talk to people and feel like, alright, I'm at a party with you, you're not going to be checking any of my organs, I can tell you who I am. But it becomes very different when you are in a setting where maybe you have half of your clothes on.”

When LGBTQ+ patients are in an environment they are not familiar with, some may not be sure if they’re safe in that environment, Leiva explained. When patients don’t feel safe, it can become much more difficult for them to disclose personal information, such as gender identity or sexual orientation.

“But as a clinician, I can't give you good care if I don't know what parts you have, and if I don't know aspects of your social determinants of health, that could influence your care,” Leiva said.

Leiva explained further that 51% of the LGBTQ+ population, when surveyed, indicated that they've experienced negative interactions with their health care providers.

“I can tell you personally, it's happened a lot. I've had my wife excluded from emergency room care. I've had many circumstances where I've been denied care because someone is not comfortable with me being gay. And I was like, ‘I am? Oh, yeah. Okay. Alright,’” Leiva said.

To better support and normalize conversations around gender identity and sexual orientation, a method termed “trauma informed care” can be implemented, according to Leiva. This method was developed by mental health practitioners to facilitate conversations with patients around difficult topics, such as patients’ experience with substance use disorder, for example.

“Part of how we do it is by avoiding discrimination by embracing somebody's identity. What does that mean? That means when I tell you what my pronouns are, believe me. If you asked me, and I'm telling you, I'm not leaving you to guess,” Leiva said.

Harm reduction is also a critical aspect of trauma informed care, Leiva explained. A lot of the work of clinicians is trying to reduce harm, whether it's telling patients with lung cancer to stop smoking, or otherwise.

“These are things that we have to try and at the very least validate a person's feelings and values,” Leiva said. “One way you can do this is when a patient tells you that maybe they've had a negative experience in the clinic, respond to that, and don't just say, ‘Oh, I'm sorry, that happened.’ [Instead], close the loop with them and say, ‘You know, I appreciate you letting me know, and I'm very sorry that you experienced this, and I will follow back up.’”

Leiva noted that it is important to validate what the patient actually experienced, instead of excusing the behavior of the individual who caused that negative experience for the patient in the clinic. Leiva explained that reasons such as the individual was in a bad mood or they are of an older generation is not enough for patients to help them feel safe in that clinical setting.

“Don't excuse bad behavior because that perpetuates it, and most [bad behavior] is unintentional. But again, this is how we practice trauma informed care,” Leiva said. “We have massive clinical blind spots when it comes to sexual minority and gender minority patients, not just in the context of cancer care, but globally, in part because we're not doing a good job at this point of collecting the data. So there are going to be areas where we don't have good answers.”

For example, a trans woman with breast cancer who has been receiving gender affirming care may have specific risks associated with continuing that care.

“How do I talk to her about, ‘Hey, your hormones might be feeding your cancer.’ If I remove those hormones, I might be causing catastrophic circumstances for this person,” Leiva said. “So these are things that are really important in terms of treating patients ethically, being honest and saying, ‘Yeah, we don't have data. So let's talk about alternatives. Let's talk about what we do know.”

When providing trauma informed care as a provider, Leiva explained that it is important to encourage patients to be able to comfortably disclose details about themselves. This requires explaining the point of these types of questions to make sure the patient feels safe.

“We're not asking for the sake of curiosity,” Leiva said. “So we really do need to explain to patients upfront why we're asking these questions, ‘Hey, I'm not just curious about where you are in your gender affirming journey, because I actually need to know these things. And here's why.’ Also, everything in life is gendered. And it's very challenging for people who maybe identify as nonbinary, or again, they're in the process of transitioning, or they have transitioned—everything is gendered when it comes to language in the United States.”

For this reason, Leiva noted that it is beneficial to avoid gendered language as much as possible, particularly in the medical environment.

“We can use things like chest examination, when we're talking to a transmasculine person, instead of breast exam. We can talk about monthly bleeding as opposed to menstruation. We can also use terms like cancer screening or HPV screening, instead of saying things like cervical cancer screening, and then also for prostate cancer screening, again, the same thing, ‘Hey, you've had a vaginoplasty, you still have a prostate, we need to check that organ,” Leiva said. “These are ways that we can use language to help provide trauma informed care and get the information that we need from patients.”

Additionally, Leiva noted that it is critical to not make assumptions about patients’ gender identity or sexual orientation and then verbalize them.

“Basically, it's never a good idea to assume things about people. This is where we get ourselves into trouble. My wife and I often get asked if we're sisters, and we always look at each other horrified,’” Leiva said. “That's, again, an important part of trauma informed care.”

Reference

Leiva M, Harris CS, Harris L. Incorporating Sexual Orientation and Gender Identity Data into Oncology Patient Care. Presented at HOPA Annual Conference 2023 in Phoenix, AZ; March 31, 2023.