A Gap in Research: How a Scarcity of Data is Affecting LGBTQ+ Healthcare Access

Striving for diversity across trials means striving for the inclusion of members of the LGBTQ+ community as well and recognizing gaps in research and representation.

Katy Fallon
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Diversifying clinical trials means more than promoting inclusivity for people of all ethnicities and races. A crucial component of diversity is sexual orientation and gender identity. Striving for diversity across trials means striving for the inclusion of members of the LGBTQ+ community as well and recognizing gaps in research and representation. 

However, that data within clinical research isn’t readily available nor prevalently studied. Essential metrics around which diseases those in the LGBTQ+ community are at higher risk for are minimal. Information regarding how non-cis gender people respond to different diseases and drugs as well as the the rate of LGBTQ+ patients in trials is near impossible to find.

Right now, the vast majority of clinical trials don’t collect any information on patients’ sexual orientation or gender identity, allowing for these gaps to emerge. The solution to eradicating these data holes is more complicated than asking patients to self identify as something other than heterosexual and cisgender. Due to sensitivity surrounding these types of conversations or being inadvertently outed, there must be a careful evaluation of how LGBTQ+ healthcare can be safer and better understood without making patients feel outed and uncomfortable. 

While solutions for navigating around this issue have yet to be accepted, it’s evident that the lack of data at a trial level for the LGBTQ+ community is funneling into detrimental issues within broader LGBTQ+ healthcare. A study done by the NCI found that just 53.1% of oncologists feel confident in their knowledge of the LGBTQ+ patients’ health needs and only 36.9% are confident in their knowledge of healthcare needs for transgender patients. Of oncologists surveyed, the majority voiced that they were interested in learning more about LGBTQ+ healthcare. The interest is there, it’s time to uncover that data and deliberately include members of the community. 

In the limited data out there identifying health differences in LGBTQ+ populations, research found that gay and bisexual men are at a higher risk for skin cancer and lesbian women should still be screened for HPV and cervical cancer. Despite these findings, the majority of oncologists say they aren’t educated in these areas, potentially resulting in added risk for LGBTQ+ patients who require screenings for these cancers. One study found that transgender patients are less likely to be screened for cancers than cisgender people, including for cervical, breast, and colorectal cancer, despite many trans individuals being at risk for developing these diseases. The perpetual lack of awareness around LGBTQ+ people and cancer risks puts those in the community in a position where cancer may go unseen. 

Until drug manufacturers identify a way to sensitively collect data around LGBTQ+ populations, healthcare will carry on without filling in these data holes. Integrating LGBTQ+ individuals into these conversations and working to develop protocols that safely allow participants to report on their gender identity and sexual orientation will allow for a future where everyone is confident in their ability to receive equal care and inclusive practices, regardless of their identity. Community-based research centers have the potential to spark these conversations given their close ties to the community. The existing patient-physician relationships there afford the trust required to give space to these discussions, allowing LGBTQ+ patients to communicate their healthcare needs and how providers and trials can better support their access to treatment and care. This calls for sponsors and community-sites alike to listen to the LGBTQ+ community, and collaborate to work towards a future where robust data and widespread knowledge allows equal care and access for all.

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