June 2, 2023

Focus Groups Amplify the Voices of Black Congregants about Disparities in Clinical Trials

Long-term relationship building and engagement key to gaining community trust

outreach to underserved communities

Left to right: Pam Combs, CNP, Heather Hurwitz, PhD, Kim Sanders, Mark Ribbins

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Much of the literature about addressing disparities in clinical trials focuses on logistical steps to breaking down barriers such as providing patients with transportation or childcare support. While those approaches are beneficial, Cleveland Clinic’s Taussig Cancer Community Outreach team found that addressing inequities also involves taking a step back and understanding how to foster deep relationships between clinicians and the community.

Background

Black Americans continue to be vastly underrepresented in cancer clinical trials, making up roughly 8.5% of trial participants. Improving enrollment across diverse populations is crucial to ensure emerging therapies are safe and effective across different populations.

A decade ago, the Outreach team launched Stopping Cancer In Its Tracks, which is a faith-based model of community outreach. The program creates relationships between the Outreach team and members and leaders of churches to support early cancer screenings for medically underserved communities. The team is focused on preventing late-stage detection through education and screenings.

Knowing that there are higher incidences of late-stage detection and the need for clinical trial options in medically underserved communities, the team wanted to explore whether they could/should be doing something on this aspect of the cancer journey. As a next step, they sought to better understand the problems of distrust in medical research and work together with the community to potentially develop interventions to address these disparities. To do so, they partnered with area churches to gain an understanding of community members’ knowledge and attitudes about clinical research.

Thanks to funding from Cleveland Clinic’s philanthropy initiative, VeloSano, the researchers launched a pilot program to conduct focus groups at six different Black and African-American churches.

Study method

Often with studies, researchers are analyzing large subsets of data, but for this purpose, the researchers wanted to drill down and learn about individual experiences among communities who had been underserved. They followed a rigorous qualitative approach to gather stories from individuals in their own words. “I think that’s really important to humanize the work we’re doing,” explains study co-author and Advance Practice Nurse Manager for Community Outreach Pamela Combs, DNP, BC-ANP.

30 people participated in the study, each for 90 to 120-minute conversations spanning a range of topics. The study, which was shared at the 2023 ASCO annual meeting, yielded valuable insights about how to foster relationships within the community. “We found that going outside the walls of the hospital to get the perspectives of the community is critical,” says Combs.

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The researchers took an open-ended approach to learning about community members’ needs and experiences. “We wanted to hear in their own words what would work for them and what they would like to see us doing,” says study co-author and Project Staff Researcher at Taussig Cancer Institute Heather McKee Hurwitz, PhD. “People shared a lot about inequalities, racism and suffering they experienced within medical institutions, and made it clear that addressing disparities will be a long-term process. We immersed ourselves in those experiences with the community. This provided the context for us and for our work going forward.”

Pamela Combs concurred. “When people are heard and feel safe in an environment where they can express themselves, it’s cathartic in many ways,” she says. “When you use this approach of allowing freedom of expression before getting into [focus group] questions, it is very rich in terms of the information you’re able to elicit.”

Study findings

People who were interviewed shared inequalities that they’ve experienced in medicine, and wanted explanations of why medicine is like that. “If you’re at a doctor’s appointment, no matter how mundane, and you receive suboptimal care or rudeness, that’s very emotional and there is a really deep memory of those experiences,” explains Combs. “The community made it really clear that the reason why addressing disparities is a long-term process is because the experiences of racism and lack of access are deep and long…Some people we spoke with were surprised that we came to their church and that anyone in healthcare cared enough to hear from them.”

Nearly every focus group brought up fear of clinical research and the Tuskegee study. This revealed not only a need to educate patients about current research safeguards, but for healthcare providers – and everyone in the healthcare ecosystem – to work on building trusting relationships with patients: Taking the time to ask them about their concerns and hearing about emotional as well as physical issues.

A key takeaway from the study is that every-day experiences that a patient has with their primary care provider is an opportunity to address disparities by improving communication and providing information and access. “We tend to think of our efforts beginning at cancer diagnosis, but the people we spoke with shared that it’s the everyday appointments that could be a deciding factor for them to join a trial down the road,” says Hurwitz.

What came out of the discussions was a desire to have tangible relationships with the healthcare community. Patients shared that relationship building would be transformative in terms of their acceptance of a clinical trial. Examples include better interactions during day-to-day medical visits, as well as ongoing community involvement, such as sharing in church services and activities and joining together in meals. Having palpable respect for people’s opinions is crucial. “People are not their disease,” explains Combs. “They are people. And we need to make sure we use language that doesn’t dehumanize. We need to be mindful and sensitive in how we communicate.”

The resounding message that the Outreach team heard was a desire for caring relationships. “Human beings respond to authenticity and warmth,” says Combs. “When we think about addressing disparities in care, we talk a lot about removing barriers but we don’t talk about how you care for someone’s soul. That is where the work is.”

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What’s next

Now that the team has an understanding of the landscape of community concerns, they are working to develop more quantitative, community-wide research. Several additional projects have come out of the early focus groups.

For example, several focus group participants shared how their lives had been touched by being part of a clinical trial. To that end, the Outreach team is creating a podcast that will both leverage these testimonials from cancer survivors who were willing to share their stories as well as feature clinicians talking about the history of inequity of trials and the importance of trials for equitable representation in healthcare. “I think it will be transformational for people across faith communities to hear these stories and understand that others in their congregation have had this experience,” said Hurwitz.

One positive outcome from the focus groups was the desire of participants to continue to work with the Outreach team. Based on this, the team plans to share study results and progress reports with the faith-based organizations involved. They will continue to solicit the community’s advice as they implement new interventions.

One novel project they are launching is a multiple myeloma screening through faith-based organizations. This blood disorder is twice as common among Black and African-American people, yet there are no current proactive screening guidelines. The team is working on developing these.

Building on this work, the Outreach team will seek input from other marginalized communities such as Hispanic women. “After we extrapolate these findings, we can begin to inform future generations and work to ensure that research properly represents the population,” says Hurwitz.

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