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Here’s why there’s a need to collect SO/GI data

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According to the CDC, without data surrounding sexual identity and gender identity, “specific health care needs cannot be identified.”

COLORADO, USA — The pandemic highlighted health disparities based on race and ethnicity, age, and socioeconomic status. However, known health care gaps and disparities are limited in the LGBTQ+ community because of data not being collected.

According to the Centers for Disease Control and Prevention (CDC), “Many health care providers do not routinely discuss sexual orientation or gender identity (SO/GI) with patients, and many health care facilities have not developed systems to collect structured SO/GI data from all patients.” 

“Because of lack of data collection, systems don’t see us,” said Mardi Moore, the Executive Director of Out Boulder County. “It’s beyond frustrating. It makes you feel like a second-class citizen, because you’re not seen and what’s most important to everyone is their health.” 

In partnerships with El Centro Amistad, Out Boulder County helped get vaccines into the arms of nearly 7,000 people who either identify as LGBTQ+ and/or Hispanic/Latino. 

“It’s great news and something to celebrate, but what we don’t know is how many we have missed throughout the state,” Moore said. 

COVID-19 vaccine administration data in Colorado, for example, collects demographic information on age, race, ethnicity and sex — but not SO/GI information. 

“That is important information, and we need to add sexual orientation and gender identity to know if our community is healthy and to know if our community is keeping others healthy,” Moore said. 

RELATED: Survey from Boulder nonprofit reveals vaccine concerns in LGBTQ+ community

In 2015, the Centers for Medicare and Medicaid Services issued a new rule that requires all electronic health record systems (EHRs), certified under Stage 3 of the Meaningful Use program to allow users to record, change, and access SO/GI data, however, it was not required to collect this information from every patient. The rule noted the requirement would help health providers better serve LGBTQ+ patients. 

“It’s gonna be tough within our community to have people check those boxes. There’s a lot of reasons to distrust the government,” Moore said, “but I think that it’s important to ask the question and leave it to people whether or not they feel confident in checking the boxes.”

9NEWS Health Expert Dr. Payal Kohli shared her perspective on the importance of SO/GI data collection. 

(Editor’s Note: Some of the following answers have been edited for clarity.) 

9NEWS: What would be the benefits of collecting SO/GI data?

Dr. Kohli: One to personalize the care that we’re delivering to our patients, but second to really collect clinical information and research data that we can then use to try to understand what the gaps are in the care of these types of communities so that we can improve them. 

I had a young, female patient the other day who came in with palpitations and the first question as a cardiologist that I always ask when I have a young female patient with palpitations is: “Is there any chance you could be pregnant?” She said no, there isn’t, and I pushed her on it more and I said “Well, if you’re sexually active then there’s always a chance you could be pregnant and I’m gonna check a pregnancy test” Then she finally felt comfortable telling me, “Dr. Kohli, I’m LGBTQ+ so there’s not a possibility that I’m pregnant, even though I’m sexually active.”

If I had known that information upfront, that time could’ve been better spent talking about something else more relevant to her care.

Do you believe collecting SO/GI data in health care should be required?

Dr. Kohli: I don’t think it ought to be mandated, because I think it’s important to do it correctly. To that end, I think it’s really important to make sure that the team that is collecting this information is properly trained, that they’re really educated on how to do culturally sensitive collection of this type of data, and then, of course, how to handle the data in a confidential manner. It has to be done in a correct manner, so that we don’t end up alienating this community more and affecting their health outcomes. 

Do the patient intake forms at your practice have SO/GI options?

Dr. Kohli: In my practice, there is an option. It’s built into the electronic medical record. I have been really surprised, because a lot people are not filling it out and I do have a lot of LGBTQ+ patients within my practice. A lot of patients, I’m noticing, are not quite at the level where they feel comfortable filling it out. We as health care providers, I think, have some work to do to try to make patients more comfortable so that they’re able to feel like they can fill it out. 

How can health care providers help people in this community feel more comfortable about disclosing this information? 

Dr. Kohli: Normalizing it so that it’s almost like asking your age or asking your medical history, or your drug allergies. It’s not a label, it’s not a judgement, it’s not something people should feel shy about sharing, and it’s not something that they should worry about the implications of sharing. 

RELATED: 12 of Colorado’s 64 counties have vaccinated 70% of those eligible

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