CISCRP’s Finding Treatments Together Brochure for LGBTQ+ Communities

Our Approach to Codeveloping an Educational Resource for the LGBTQ+ Community

When creating a brochure for diverse populations of people it’s important to consider an expansive definition of diversity that includes, but is not limited to, ethnic and racial identity. In this case, our intended audience included Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, and Asexual people (LGBTQ+), in addition to all other sexual orientations, gender identities, and gender expressions. Given that sexual identity intersects with every other form of identity, we had to take particular care to ensure that the diverse perspectives of this community were represented in the brochure. In practice, that meant acknowledging and giving space for people to speak about the many identities they inhabit and how those other identities inform their LGBTQ+ experiences.

Our discussions with subject matter experts and members of the public from the LGBTQ+ community also showed us that it was most important to give members of this community the tools they needed to navigate clinical trials in a such way that gave them agency and outlined the initial steps for making change by participating in advocacy groups and as members of the public on ethics committees.

Once we incorporated feedback from the aforementioned SMEs and community members, we tested the brochure with a survey sent to 500 members of the LGBTQ+ community to ensure that the brochure was culturally competent, neutral, and informative. This process helped make sure the topics, language, images, and design are appropriate and engaging. We also received feedback on how effective our brochure was for raising awareness about the importance of LGBTQ+ participation in clinical research.

Key Insights We Learned About Including LGBTQ+ People in Clinical Research

Respondents emphasized that the onus for navigating clinical trials as a member of the LGBTQ+ should be shared: researchers must acknowledge that the determinants of health and the ability to participate in clinical research are multidimensional. For example, one’s lived experience, geographic location, ability to access health services and procedures are also important variables when considering how to make treatments safe and effective for everyone.

To that end, this brochure was created to raise awareness about clinical trials and to identify the barriers to inclusion, and the potential concerns members of the LGBTQ+ community may have with participation in clinical trials. To do this well, we had to consider how history, culture, and even current events may structure a group’s perception of clinical trials. Our initial research with SMEs and community advocates brought up historical wrongs, such as the US federal government’s hostility towards HIV/AIDS research, that have left enduring legacies of mistrust and suspicion towards clinical trials. However, the source of this mistrust isn’t confined to the past: many of our conversations with SMEs centered on current legislation at the state level that targets trans and non-binary people by denying them necessary medical care has likely had a chilling effect on their seeking medical care or clinical trials.

When we spoke about these issues to members of the LGBTQ+ community we received critical feedback that raising awareness was important but insufficient. In order to develop the most helpful version of this brochure, we were asked to highlight the ways in which the lack of action from researchers to be more inclusive negatively impacted access to care, willingness to participate, and the overall experience of participation for those who did partake. They advocated for switching the narrative from one that asked LGBTQ+ people to navigate the pitfalls of clinical trials, to one that also put the onus on researchers to accommodate their needs. Reviewers emphasized that this approach moved the onus of accommodation from participants to researchers.

Next Steps Towards LGBTQ+ Inclusion in Clinical Research

However, there is so much more work to be done. Collaborating with LGBTQ+ communities to raise awareness about representation and inclusion of LGBTQ+ people in clinical research must be an ongoing efforts in all spheres of the clinical research industry, as conditions are continuously changing. In practice, these efforts would include  outreach, awareness, and empowerment of the communities with education and resources to help them participate in their own advocacy.  In addition to empowering participants, researchers must initiate their own educations to ensure they are adopting more inclusive practices.

Testimonial

It gives me great pleasure to share my testimony on working with the Center for Information & Study on Clinical Research Participation (CISCRP) for a number of years; most recently on their LGBTQ+ brochure project, the development of which I had the incredible privilege of being a small part of. From its very inception, it was clear that this was not just ‘another brochure,’ but a meaningful step towards addressing the long-standing gaps in clinical trial participation and research among the LGBTQ+ community. The journey towards crafting CISCRP’s comprehensive and inclusive resource once again demonstrates not only their ongoing, deep commitment to highlighting the urgent need for further work to ensure genuine inclusion but also to further explore the unique challenges faced by some of the most under-resourced populations in the realm of clinical trials.

The development process, as is always the hallmark of the CISCRP team, was again marked by unwavering dedication, collaborative effort, and an unyielding commitment to authenticity. We had the pleasure and privilege of engaging with community members, medical professionals, and LGBTQ+ advocacy organizations to ensure that every aspect of the brochure resonated with the lived experiences of those for whom it was designed to serve.

This brochure is a tool – a catalyst for change – that has the potential to spark meaningful conversations, challenge preconceptions, and drive research policy reforms. I heartily commend the CISCRP team for recognizing the importance of inclusivity and continuing their critical work to dismantle stigmas, advocate for change, and ensure representation among all individuals at the table – and to empower communities to actively shape the future of clinical research. My journey in helping to develop the LGBTQ+ brochure for CISCRP has been an experience of profound learning, empathy, and hope, and one that reinforces the fact that progress is made through collaboration, compassion, and a relentless pursuit of equality.

This is an endeavor to celebrate, though we must remember that the path ahead is still quite long. I have every confidence that the CISCRP team’s dedication in ensuring every voice is heard, every story is valued, and every individual is embraced within the scientific arena will be resolute. I commend them on, and deeply appreciate, their quest for engaged representation and inclusivity in clinical trials for all. It is a true honor to work with this team and contribute to their meaningful efforts as THE leader in patient engagement, clinical research education, and clinical trial research and participation.

Heather C. Guidone, BCPA, Surgical Program Director  
The Center for Endometriosis Care

Medical Hero Spotlight: Brittany Foster, Pulmonary Hypertension Patient Advocate

Living with Pulmonary Hypertension

Brittany Foster may not appear to be struggling with a chronic condition upon first impression, however, she has been navigating a series of complex medical diagnoses for decades. At birth, doctors discovered Britt had a blockage in her intestines. She was rushed into emergency surgery, where it was quickly discovered she had also been born with a heart defect when she went into sudden cardiac arrest. At less than a year old, Britt was taking medication for heart failure and had a procedure to repair the hole in the bottom of her heart, called a ventricular septal defect. Soon after, she was diagnosed with pulmonary hypertension, a condition that forces her heart to work overtime to pump blood to her lungs.

Despite this diagnosis early on, Britt enjoyed a relatively normal childhood. She was very active, participating in nearly every sport with no issues. For years, the only evidence of her condition were the scars from her surgery as an infant.

Unfortunately, around the age of thirteen, Britt found herself struggling with shortness of breath while playing sports. Her cardiologist recommended she take a pulmonary function test, believing the symptom to be exercise-induced asthma. She was given inhalers and continued with daily life but soon found the inhalers weren’t fully effective.

“At that age, all I wanted to do was what my friends were doing. I loved playing sports, so I kept at it, despite my continued breathing difficulties,” Britt says.

Upon graduation, Britt began a career path in education as a teacher, a role that exemplified her passion for advocacy and helping others. “I wanted to advocate for the students who need resources, or who in some cases, did not have the ability to speak up for themselves,” Britt says. Four years into her career, Britt was managing an eighth-grade classroom when her condition began to impact her daily life again. “Many people don’t realize what a physically demanding job teaching is,” Britt reflects. “I was on my feet all day walking around the classroom and bending and crouching very often. One day I got incredibly lightheaded and ended up passing out in the classroom.”

Changing Directions: From Teaching to Rare Disease Advocacy
“Unfortunately, a big part of my story has been repeated mistreatment from medical professionals. As a young woman who physically appeared to be in good health, assumptions were made about me by doctors who weren’t interested in my prior history or symptoms,” Britt says.

After being rushed to the ER from her classroom, Britt’s doctors concluded she fainted due to dehydration despite her history of heart disease. They planned to send her home to rest with fluids, but Britt knew something else was wrong.

“I was lucky that right before being discharged, a nurse started asking more probing questions about what I had been doing right before fainting. We decided I should walk down the hallway with a heart monitor and oxygen sensor to evaluate,” Britt recalls. Within minutes, Britt’s oxygen levels had dropped rapidly, and doctors finally decided to admit her into the cardiac unit for further treatment.

Britt was released later from the hospital with an oxygen tank to assist her breathing and was told to adapt her life around her pulmonary hypertension. “I was only twenty-six years old,” Britt says. “The tanks were huge and difficult to get around with. I wasn’t given any resources on how to adapt my life, but I knew I wanted to get back into my classroom and start teaching again.”

Britt went back to teaching for several months and finished the school year but struggled with her oxygen tank throughout. Over the summer, she met with her doctors who strongly advised her to change career paths. Britt made the hardest decision of her life to retire from teaching. “I felt incredibly discouraged and depressed watching other teachers move on with a new school year, while I was sick in bed,” Britt recalls.

Finding Community & Support

During this time, Britt struggled with depression and anxiety. She turned to writing as an outlet, sharing her experience on social media, and eventually going on to write for a nonprofit organization that promotes mental health awareness. Soon after, she was hired as a columnist for BioNews to write about pulmonary hypertension. “From there I was able to start connecting with other patients, caregivers, and medical professionals, which helped build the sense of community and purpose that I had been missing,” Britt says.


In the years since, Britt most recently worked on the People & Culture team, a position that she loved. “I am grateful that BioNews truly values employees’ health and makes sure to accommodate our needs.”


Throughout her medical journey, Britt says her friends and family have been her biggest supporters. She encourages others with rare diseases to not be afraid to speak up about their experiences.

Continued Medical Treatement

Since her initial diagnosis, Britt has continued to undergo medical treatment, as doctors began to better understand her condition. At age twenty-nine, it was discovered the Britt was born with an anatomically misplaced aorta, in addition to the hole in her heart.

“My aorta branches off to the right, so all my arteries are opposite. I was in the hospital, sick and unable to keep food down. Doctors were trying to diagnose me with bulimia, until a GI specialist stepped in and found that because of my aorta, my arteries had formed a tight branch around my esophagus, making it painful to eat or drink,” Britt says.

Because of the long-term compression on her trachea and esophagus, Britt needed surgery to repair the damage. Unfortunately, this condition has caused permanent nerve damage, gastroparesis, and esophageal dysphasia. Since her surgery, Britt has become feeding-tube dependent to ensure she has adequate nutrition.

Advice for Patients

As someone who has navigated the healthcare system with a rare condition, Britt has learned valuable lessons along the way that she shares with others whenever she can.

Find a medical professional you can trust to advocate for your care.

“Rebuilding trust in medical professionals has been a challenge for me, but finding trusted doctors I can rely on has been a big help. I have an excellent relationship with my primary physician who leads my care and truly advocates for me,” Britt says.

Create a medical overview binder to share in emergencies and with new doctors.

Emergency rooms are fast paced and fast moving. When admitted, you may end up speaking with multiple doctors who haven’t spoken directly with each other about your condition. Britt recommends having one provider you trust assist you in building a document that includes all your medical diagnoses with explanations, any medications, or treatments you are currently taking, and the contact information and signature of that doctor. “I bring this folder any time I have to visit the ER and have the file stored on my phone to show staff as well,” Britt says. These documents can be helpful for treatment so that new doctors are aware of your baseline levels and other conditions.

Surround yourself with people who understand your condition and who support you.

“My medical condition has made my life and daily routine very inconsistent,” Britt says. “I never know when something will come up and I’ll need to cancel plans. Socializing takes a lot more planning now, which can be difficult.” If someone in your life is living with a chronic condition or a rare disease, Britt recommends becoming educated about their condition and learning to adjust expectations when it comes to socializing and other daily commitments.

Trust the timing of your life.

“Six years ago, I thought I had no future and I had lost a career I was passionate about because of my rare disease. Today, I have a supportive community of people who understand my experience and for that I am grateful.”

Additional Resources:

https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-hypertension

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

For volunteer opportunities with CISCRP, visit our Volunteer page.

Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org