Members of the transgender and non-binary community face myriad challenges during healthcare interactions, including unequal treatment and inappropriate curiosity from healthcare staff. Additionally, there is a widespread lack of understanding of specific transgender health needs and difficulties assessing approaches to healthcare by medical professionals. As a result, 37% of transgender people and 33% of non-binary people responding to a recent survey, reported having avoided medical treatment for fear of discrimination. 62% of transgender people said they have experienced a lack of understanding of specific trans health needs by healthcare staff. (1) A report published by the UCLA School of Law Williams Institute reports that 1.4 million adults in the United States identify as transgender. (2) Colleagues at Parexel International recently conducted a comprehensive review of current medical literature to assess the barriers that transgender and non-binary individuals face to medical care and clinical trial participation, in an effort to enhance the clinical research environment and promote inclusivity.
“We spent quite a lot of time speaking with members of the transgender community and we had a patient advisory council meeting at Parexel where we invited members of the community to speak with us, so that we could listen and learn how we can do better as an industry,” says Rosamund (Roz) Round, Vice President, Patient Innovation Center & Decentralized Trials, Parexel International. Recommendations included strategies for clinical site staff and transgender and non-binary individuals seeking health care in general, as well as through participation in clinical research.
Respecting the Individual
“It’s all about the lived experience of the patient. When we think about health professionals and health professionals who run clinical trials, they have to have an understanding of the transgender community, including things such as pronoun use, life experiences, health practices- all of those things are a foundation for making it a more inclusive environment for all transgender patients,” says Liam Paschall, Global Business Training Partner at Parexel, a transgender man who knows how critical and life-altering inclusive healthcare and clinical trials can be to members of the LGBTQ+ community.
“I think for anyone who is new, (to providing medical care to members of the transgender and non-binary community) the important thing is to know that you might not get it right every time, but it’s important that you learn,” says Roz. “If you use an incorrect pronoun, for example, the important thing is to apologize, move on and do better next time.”
Providing Education & Training for Medical Staff
Liam points to the importance of providing education and training for clinical research and other medical staff. Key topics to cover include the differences between biological sex, sexual orientation, gender identity and gender expression.
“We can do all the work that we can on getting the intake forms right and our systems correct, but if every member of a particular facility, hospital – wherever it is – is not fully educated and trained on how to work with trans patients, it’s not going to change,” says Liam. “It comes down to the individual. Every single person who comes into contact with that patient has to know how to talk to that patient, has to know the right questions to ask, has to understand that they can’t react a certain way, for example, if there is a transgender female, who they feel doesn’t necessarily look the role of being female. It’s all about respect.”
Dr. Sebastian Barr, a licensed psychologist and transgender man who specializes in helping institutions and healthcare providers adopt affirming, inclusive and evidence-based practices in both clinical work and research with members of the transgender community, underlines the importance of cultural humility training and education for staff at every level.
“There is true complexity in the diversity of different biological components that transgender people bring, but what I would remind people of is that there is huge diversity in non-transgender people’s bodies and biologies, as well,” says Sebastian.
Bridging the Trust Gap
There are historical and current reasons and examples as to why there is mistrust of the health care system by transgender and non-binary community members. To bridge this trust gap, Sebastian advises recognizing the diversity within the communities.
“There is a lot more marginalization and oppression of trans women, trans people of color, trans women of color, and non-binary folks,” says Sebastian. “How do we tell the trans community that we have their best interests at heart? We make sure that we are talking to everyone.”
Sebastian also recommends building relationships with community organizations and community members who can facilitate recruitment for clinical research and coordinate advisory boards so that “…you’re not just telling people that you’re trustworthy, but you’re demonstrating that you are and that you have actively considered their participation.”
Modifying Intake Forms
The majority of intake forms in medical settings that Liam has viewed are not representative of the transgender community. “It’s hard to get people to share, in terms of their identity and sexual orientation, when it doesn’t seem like the intake forms and the questions being asked are inclusive of who we are,” says Liam.
“In medical systems, we do a lot of gendering. Everything from records, lab results, the way that we talk about anatomy, in the way that we talk, even casually, about patients. Forms are a really important starting point,” says Sebastian. “Actually integrating what people are telling you about themselves and integrating that with how you and your colleagues are discussing who you are working with is a critical next step.”
Roz recommends that clinical research professionals conduct protocol review sessions to ensure that there are not items built into the protocol that are inadvertently exclusionary. In a conversation with a member of the scientific community, Roz learned that historically, there had not been transgender and non-binary participation in clinical research because it was not written in the protocol.
“Things evolve and the world changes. The scientific review of protocols to see what is really necessary and the need to enable diversity within protocols, where possible, is really important,” says Roz. “Just because it never has doesn’t mean that it can’t.”
Developing a strategy that includes working with patient advocacy groups, patients and caregivers in the actual design of the clinical trial protocol is key.
Removing Barriers to Participation in Clinical Research
In order to remove barriers to participation in clinical trials for the transgender and non-binary community, Liam advises that clinical research professionals recognize “…things like accessibility, language, confidentiality concerns, make sure we’re not ‘outing’ people, cultural humility training for the staff, sexual orientation and gender identity inclusive intake forms, strategies for public outreach and education, financial reimbursement for expenses, and trans-specific resources in general would be a big help.”
Another step is providing non-gendered spaces in medical facilities. “Creating gender neutral bathrooms is really critical and not challenging, operationally, to do, for example. And it can be a really big difference about how comfortable someone feels or their fear of being revealed,” says Roz.
Involving Community Members as Part of the Health Care Team
“I would recommend that the transgender community not be involved in clinical research where there isn’t an identifiable transgender person involved on the team,” says Sebastian. “I know that sounds severe, but there’s so much risk of harm. Look to see who’s guiding the project and if it will be safe for your involvement.”
Liam adds “There’s a lot of drugs that behave differently from one population to another. So whether there’s a transgender person at the medical facility or not, (medical professionals need to) really understand the differences, at the clinical trial stage, that could leave transgender patients at risk of an avoidable safety issue. Having a diverse and inclusive study population does help to ensure an adequate understanding of how the drugs work and how safe it is across the target population.”
In order to design clinical trials that are truly inclusive, clinical research professionals need to have an understanding of the transgender and non-binary community as a whole. To learn more, access the webinar “Improving Access to and Experiences of Transgender and Non-Binary Patients in Clinical Research” here.
Written by Melissa E. Daley, Communications & Marketing Manager, CISCRP
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(1) LGBT in Britain; Health Report. Stonewell, 2018 and 2015 US Transgender Survey
(2) Report: How Many Adults Identify as Transgender in the United States?, UCLA School of Law, Williams Institute