For years, Sara worked in a hospital, making care possible for others. Now, after being diagnosed with breast cancer, she was the one in need of care.
In May 2013, Yasmeem Watson was 35-years-old, living a good life as she described it, when she received a diagnosis of Stage 3 colorectal cancer. Yasmeem was not going to let the disease beat her, and thus her journey began.
She began by self-advocating. Her father had died from cancer in her early 20s. Yasmeem noted, “I was his advocate. I wasn’t new to advocating on behalf of someone. I knew what it took.” She began extensive research to learn everything she could about her cancer. As a young Black woman, she had a hard time finding a patient support group. A breast cancer support group was recommended to her even though she had colon cancer and though she ultimately found her tribe through her own ongoing research, there were few patients from a similar background that she could relate to.
Yasmeem set out on a mission to change this, dedicating herself to helping and advocating for other patients.At one point in her own cancer journey, Yasmeem was given a brochure on a clinical trial and she threw it away. Initially, she thought of a clinical trial as an experiment. But her natural curiosity took over. “I wanted to make a difference. Once I started to do my research about clinical trials, I understood their importance for people in the future."
"Clinical trials move science forward and if I could be a part of this, it was something I wanted to do.”
Although other medical issues took her out of the clinical trial, she continued her quest to learn more about clinical research and its outcome, ultimately becoming part of the Alliance for Clinical Trials, focusing on creating diversity within the clinical trial space. Yasmeem speaks about widespread mistrust of the medical community and skepticism around clinical trial participation among Black and African Americans, often attributed to negative historic events and a lack of cultural sensitivity from the healthcare team. “It’s a longstanding problem,” Yasmeem says.
“My goal is to get people to understand that, yes, there have been past negatives, but clinical trials are necessary for the path forward.”
Yasmeem continues to work tirelessly to ensure diverse populations are included in the future of science, to bring broader representation into clinical research and “change the look of science and diversity in the medical community.”
In her advocacy work, Yasmeem has engaged diverse populations in discussions about clinical trials among patients, across the healthcare community, within pharma companies and CROs, with the Department of Defense and other government entities. When asked what steps she thinks will improve diversity in clinical research Yasmeem says, “Honesty — patients are already thinking of things that happened in the past. We all have common knowledge in minority communities. No one is talking about them."
"If the medical community and pharma industry are not acknowledging past negative events, it lessens the trust. We have to be transparent and discuss these things so we can move past them.”
Also, Yasmeem says proactive outreach into underrepresented communities is critical, while appreciating that the unique experiences and characteristics of the different communities requires unique messaging. “White coats are intimidating, but if communication comes from medical staff that looks like the patient, acknowledges their potential fear of the medical establishment and takes the time to provide good information, this will build trust,” she notes. “The physician may be the only person in that patient’s life who can describe a clinical trial and help them understand they contribute to changing science. Being included in that conversation is most important to helping patients make an informed decision.”
In Yasmeem’s experience, there isn’t much diversity in advocacy groups, so she continues her work to change that. “Everyone needs to take their healthcare seriously and not just rely on a physician,” she says. “I want to advocate for myself always and I want to speak up for the person that can’t speak up for themselves because they may not have a voice or know how to speak up for themselves. That’s where I believe I can help and make a difference.”
Yasmeem shared, “In the advocacy world we deal with a lot of grief because you are surrounded by cancer. I once lost six people in a six-week period. It was a very hard time for me, and I almost wanted to stop doing the advocacy work. But I had to remind myself why I’m doing this."
"I had to remind myself that yes, these people have passed, but I don’t want it to be in vain. So I continue what we started, to help others.”
“I’ve done a lot of advocacy work,” Yasmeem concluded. “I’ve worked with several companies and there is always a meeting on diversity. They issue a report but there is no follow up, no action. Parexel has been putting action into everything they’ve told me they would do. There’s been follow up, there’s been action behind the report, consistent work. I appreciate that. Someone’s actually taking diversity seriously. It’s long overdue but it’s here. And I feel that they are on the forefront of change, and I want to continue to be a part of it.”