Barriers prevent Black patients with food allergy from participating in clinical research
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Key takeaways:
- One in 10 adults and children from low-income or marginalized communities had participated in research.
- Six out of 10 adults said they would be willing to participate in research.
ANAHEIM, Calif. — Black patients with food allergies want to participate in clinical studies, but access is an issue, according to a poster presented at the American College of Allergy, Asthma & Immunology Annual Scientific Meeting.
“This was a survey that we did to better understand what the barriers to research are, because we see low prevalence of participation in the Black community,” Adeela Abbasi, assistant director of health equity at Food Allergy Research & Education (FARE), told Healio.
“There isn’t hesitancy,” she continued. “There is a lack of actually coming into the community and educating folks and saying, ‘Hey, here’s an opportunity that’s available.’”
The authors noted that food allergy is a potentially life-threatening disease that affects approximately 33 million Americans, with substantive racial and economic disparities.
For example, the authors wrote, Black Americans are significantly more likely to have food allergy than white Americans. Also, allergy-safe foods can be costly and challenging to find for low-income, marginalized families who live in food deserts.
However, historically underrepresented and low-income populations do not often participate in medical research in general and in food allergy research in particular.
The authors recruited 68 adults (80% female; 84% Black; 94% non-Hispanic) with food allergy or who were caregivers of children with food allergy (68%) from Wards 7 and 8 in Washington, D.C., to participate in an online survey in April 2022.
These participants also generally reported low socioeconomic status, including 30% with an annual household income of $12,880 or below, 10% between $12,881 and $21,960, and 11% between $21,961 and $31,040.
“One in 10 adults and children have participated in some kind of research clinical trial,” Abbasi said. “Six out of 10 of them would be willing to participate in research.”
Also, Abbasi said, five out of 10 caregivers would allow their children to participate in research, and seven out of 10 participants said that they trust doctors who conduct medical research.
“There is a big misconception that mistrust is the issue,” Abbasi said. “What it actually is, is just accessibility.”
The community needs a better understanding of when these trials are available, Abbasi explained.
“How do you bring the trials into the community?” she said.
By conducting trials in these communities, Abbasi said, participants would not have to travel or find childcare. Representation in outreach matters as well, she continued.
“Having individuals who look like the community that they’re trying to target can be helpful,” she said. “Or you could identify a person who has participated in clinical trials and use them [to provide] a testimonial or as somebody who can be a liaison between the research team and the community.”
The survey also determined the most common food allergies, including shellfish (46%), peanut (43%), tree nuts (30%), other (20%), cow’s milk (17%), sesame (10%), soy (10%), egg (9%), finned fish (9%) and wheat (9%).
The high prevalence of shellfish allergies correlated with the presence of cockroaches, which are very common in dense, urban communities but not associated with cleanliness or other hygienic factors, Abbasi said.
“When you’re living in dense populations, that’s always going to be an issue,” she said.
Food insecurity was an issue and may exacerbate food allergies as well, Abbasi continued, with only three grocery stores in all of Wards 7 and 8, which are predominantly Black with lower incomes.
“Their access to healthy, safe food is very lacking in these parts of the city,” Abbasi said.
Against this background, the authors asked participants why they would want to participate in food allergy research. Motivations included:
- “to benefit people like me” (59%);
- “to further science” (47%);
- “to get paid or receive some other reward” (35%);
- “to improve my/my child’s health or quality of life” (29%);
- “to learn more about my/my child’s condition” (29%); and
- “to get access to a type of treatment not offered outside of a health research study” (18%).
“They’re mostly altruistic reasons,” Abbasi said. “People want to do it to further science. They want to do it to make a better opportunity for the children after them. I think that speaks very positively as well about the potential for research in the Black community.”
FARE is now working to connect these communities with research through its FARE Neighborhoods Initiative.
“We are bringing education. We are bringing information. We are trying to connect. Collaboration is one of the main pillars of the program,” Abbasi said. “We’re trying to make sure that providers have an understanding of this type of research and that we act as a liaison or connector for organizations that are trying to get more information.”
With a focus on under-resourced communities, the FARE Neighborhoods Initiative is active in Chicago, Newark, N.J., and Washington, D.C., and will soon launch in three Southern states as part of its expansion effort, Abbasi said. A volunteer advisory council comprising caregivers, adults with food allergies, professionals and community stakeholders guides program activity.
In partnership with community organizations, health care providers, schools and other entities, she continued, FARE collaborates with advisory councils to develop community-specific education and awareness initiatives.
Activities include education for school nurses, training for food assistance staff and schools, general community education, and outreach events, both in-person and virtual/hybrid.
“We also are able to create resources and information about food allergy research, prioritizing clear and straightforward language that everyone can understand, which includes inclusive messaging for our diverse audiences and culturally sensitive information that respects and reflects the many different cultural backgrounds of the communities we work with,” Abbasi said.
Doctors and other medical professionals who would like to connect their communities with research or research opportunities such as clinical trials should encourage patients to join the FARE Patient Registry as well as local clinical research opportunities, she continued. This private and secure database is designed to allow people with food allergies to help advance research by sharing their experiences.
“By joining, patients will have access to answer survey questions, and those answers will be used to better understand the disease and search for new treatments,” Abbasi said. “Patients and caregivers will also have the option to connect with researchers and learn more about clinical trial opportunities.”
Additionally, FARE is working to open the food allergy workforce pipeline through its Health Equity Scholars Program for graduate/medical students and its Health Equity Internship Program for undergraduate students.
“The programs provide students from underrepresented backgrounds with opportunities to engage deeply in food allergy research, data analysis and community engagement,” Abbasi said. “The programs emphasize career development, goal setting and building the necessary skills for success.”