Recapping the webinar in collaboration with Clario
At CISCRP, we value the importance of engaging and informing the groups that are underrepresented in clinical trials. One of these underrepresented groups is the LGBTQ+ community. Earlier this year, we published an educational brochure as a part of our Finding Treatments Together series for the LGBTQ+ community. This brochure features topics about why LGBTQ+ volunteers are needed and how they are protected, along with providing resources on where they can go to get more information and sign up for trials.
On June 27, 2023, CISCRP partnered with Clario to host a webinar called “Working Towards a More Inclusive Environment: Transgender & Non-Binary Participants in Clinical Research.” June is Pride Month in the United States, so we thought it appropriate to have an important discussion related to LGBTQ+ topics. With a similar goal in mind, Clario approached CISCRP with the idea for a webinar project to highlight the clinical trial and healthcare experiences of the transgender and non-binary communities. The LGBTQ+ community is vast and inclusive of different sexual orientation and gender expression groups, and each of these groups have their own unique sets of challenges they encounter. For this reason, it is important to engage with each of these groups to understand their experiences.
Jae Bailey (They/Them)
Liam Paschall (He/Him)
To better understand how best to engage with members of this community, we teamed up with 2 members of the transgender and non-binary community to facilitate the webinar. Our facilitators were Liam Paschall (he/him) and Jae Bailey (they/them). Liam is a transgender man who is a consultant and public speaker who advocates for the LGBTQ+ community in efforts to create a more inclusive environment in healthcare. Jae Bailey, a non-binary artist, model, and activist, works in the clinical field and is passionate about being a voice for the LGBTQ+ community, especially within the clinical field.
“Including transgender and non-binary people in clinical trials is crucial for equitable healthcare,” Liam said. “By including trans and non-binary people, we can enhance the understanding of how treatments affect different populations, leading to more effective and tailored healthcare for all individuals. Participating in the recent CISCRP/Clario webinar was an empowering experience. It provided an opportunity to share personal insights and challenges faced by transgender and non-binary people, advocate for improved representation, and promote better healthcare outcomes. It was a chance to foster understanding, challenge biases, and contribute to positive change in clinical research and healthcare.”
Hearing firsthand from people who are subject matter experts in their lived experience helps bring about the changes that are needed. We at CISCRP were thrilled to collaborate with Clario to organize this webinar. “There is a huge difference between knowing and feeling,” said Rosie Woolley (she/they), LGBTQ+ ERG Co-Chair at Clario. “We know there is inequality. It’s why we and CISCRP do the incredibly important work we do. However, hearing the experience of a person undergoing medical treatment and how their gender identity was not recognized made it all real again. We get caught up in statistics but moments like this make these challenges human again. Hearing one of the speakers want to ‘leap from the [operating] table’ was incredibly emotive. It’s recognizing his fear, his doubt, and his pain. Vulnerable sessions like these are what inspire people to act. The whole presentation was an excellent tour of the topic; taking people from base understanding through to the impact in clinical trials and how they can help. I would deeply recommend.”
A few major takeaways from the webinar were the steps Liam and Jae listed on what we, as a society, can do to ensure fair and equitable treatment of transgender and non-binary people in healthcare and clinical research. These include:
- A deliberate culture shift and goal setting, such as diversity, equity, and inclusion (DEI) training for all researchers and site staff.
- Partnership and collaboration to include transgender and non-binary community members on advisory boards, or to make adjustments to protocols, ICFs, and data collection forms. This could be as simple as including “transgender man/woman” and “non-binary” as gender options on an intake form.
- Outreach and community engagement to improve conversations and partnerships between industry and the communities.
- Inclusive environments, which include the use of gender-neutral language, using chosen names and pronouns, and fostering a compassionate and nonjudgmental environment.
These are just a few examples of ways to be more inclusive of transgender and non-binary people. However, there is much work to be done. It’s not only the responsibility of healthcare workers and researchers to take action, but we, as a society, can also take steps to create a more inclusive environment for these communities. Also, these 2 groups are just a portion of the greater LGBTQ+ community. We need to think of what we can do for other community members and how to foster a more inclusive environment for all. Our work doesn’t stop here; this is just the beginning.
Written by: Zarin Tasnim
For more actions and insights, watch the full webinar here.