A call to add sexual orientation and gender identity data to electronic health records

There are more openly LGBTQ+ people in the U.S. than ever, but little is known about the unique health challenges they may face. That’s why some researchers are urging health systems to build the acronym SOGIE — for patients’ sexual orientation and gender identity and expression — into their data collection.

In a paper published Wednesday in JAMA Cardiology, a group of cardiologists write that there is an urgent need to begin collecting SOGIE data more systematically across electronic health records, public databases, registries, and clinical trials.

It’s known that populations who are marginalized due to their race, sex, and other factors experience various health disparities. Small, cross-sectional analyses have indicated that some LGBTQ+ populations may have lower overall cardiovascular health scores (bisexual women in particular) and report higher rates of smoking and other behaviors that increase risk of cardiovascular disease. And there’s limited information about disparities for other diseases, such as cancer. But without more comprehensive SOGIE data, it’s difficult for clinicians and researchers to address the varying health disparities that may affect people within different queer identities.

STAT spoke with paper authors Brototo Deb, a resident physician at Georgetown University, and Stephen Cook, a cardiologist with Indiana Heart Physicians.

The conversation has been edited and condensed for clarity.

What is the effect of not collecting SOGIE data, and is the risk for cardiovascular health particularly high?

Deb: The cardiovascular outcomes in patients who belong to minoritized populations are worse, and that has been pretty unanimously shown in studies. And I think from that standpoint, this is another axis of identity which has not been recognized in clinical trials, as well as observational research. Therefore, there is no way for us to know what some of the risk factors are that are unique to the LGBTQ population. The fact that we don’t know this information actually paralyzes us as not understanding the social determinants that play into cardiovascular health.

Cook: We know more and more about LGBTQ-specific stressors like fear of coming out, fear of stigma about associated with being — I’ll just use the word queer as an umbrella term for LGBTQ+ — fear of being queer, fear of being discriminated against in a health care environment. If you combine those specific minority stressors with life stress — financial stress and stress of getting a hospital bill, those two together — we know those contribute to cardiovascular health disparities for LGBTQ+ adults. But if we don’t collect SOGIE data, we’ll have no idea how to target therapeutic interventions, how to reduce disparities, and how to even address cardiovascular preventative health care in LGBTQ+ adults. If I’m in my cardiology clinic next week, if I know nothing about how to collect SOGIE data because we don’t do it routinely, how can I even do routine preventative health care maintenance for LGBTQ+ adults who potentially could be coming to my clinic?

In thinking about how to approach this problem, what should be addressed first? Is there a particular type of data — EHRs, trials, etc. — that is at the top of the list?

Deb: I would say it should be the electronic health records because, if we make research people collect this data, then this gets siloed into people who already do this research. But this is not only about research — there are clinical things at stake that we need to address, including screening practices, cancer screening practices depending upon what organs you have, and cardiovascular screenings so that you can manage tobacco exposure.

Cook: When you start at the EHR level, it also impacts the institutional level. If we’re collecting SOGIE data in our EHR, that requires a lot of training at many levels. When somebody comes in who is LGBTQ+, it requires knowledge about pronouns and understanding how to enter that data into the EHR. And not just pronouns, but a patient’s name as well, which may not match the name that’s in the EHR, and how to collect gender and sexual orientation data. So I think that also requires a lot of ownership on the institutions to train front desk personnel, as well as the medical staff. There’s a lot of upward training that has to go hand in hand with just loading up the EHR, and that could be incredibly beneficial.

Deb: We need a diverse workforce, which includes queer adults. We also need queer patients involved in this process so that they can give us feedback in the way that this data is collected.

How does the political atmosphere in the country, with more attacks on LGBTQ+ rights and health care in particular, affect the likelihood of this data getting collected across the country?

Cook: Unfortunately, politics are going to really sway what states would rapidly adopt collecting SOGIE data in the electronic health record. But what I’d like to see in the future is: There’s certain medical bodies that should really push this forward. I know the American Medical Association is very dedicated to collecting SOGIE data from their participants in the American Medical Association. I’m hoping that the AMA would broadly say this should be collected in all 50 states. We need big, big voices like the American Medical Association, the American College of Cardiology, and the Society for Cardiac Angiography and Interventions to say this needs to be collected for our patients who are at risk for cardiovascular disease. It needs to come from an intermediate body who has no political agenda, but wants to do what’s right for the patients.

What are other challenges to collecting this data?

Deb: A lot of health care providers think that collecting this data is too sensitive and they are not equipped to ask these questions in a sensitive manner. So they are hesitant, and sometimes think patients might get offended if they ask these questions. But it has been seen in some studies that when you do ask patients for this data, people are OK with providing it and they are not offended. Also there is less training from a medical education standpoint on queer and transgender health.

In data that we already have, a lot of literature has collected sex assigned at birth data and identified it as gender. You cannot go back and fix those things. Regarding the analysis of the data, everybody’s like, “Oh, there are too many [categories of identity] and if we list separately, we lose statistical power.” But you can still describe all of them in your paper. Instead of grouping them into others and othering them in the research process, we should list them all.

What are your hopes and expectations for the future?

Deb: I’m an eternal optimist. The political atmosphere is something that we cannot control, but we can control how we can advocate for our patients.

Cook: I’ll be a little bit less optimistic, but I’ll tell you why. The EHR has been able to collect this data for quite some time. It is not mandatory to collect this data, and I think that’s why it’s not collected. One of the biggest thrusts that I hope to see from this manuscript is education and awareness. And hopefully between myself and Brodie, we do this manuscript, another manuscript, and collect more SOGIE data and publish more about cardiovascular disease in the LGBTQ+ patient population. And then people have an “aha” moment and say, “Oh my gosh, I should train myself” and things like that. We’re in a very different place in 2024, than we were in 1976, or 2001 when I started my fellowship training. This is a very, very different era, which is a good thing.