Creating trust, catching colon cancer early in the African American community

For Jewel M. Kling, M.D., M.P.H., a pilot program offering 450 free at-home cancer screening kits was exciting for reasons beyond the usual clinical opportunities. The pilot would also mean a chance to build relationships with underserved communities in the Phoenix area — and offer a welcome opportunity to put Mayo Clinic’s Commitment Against Racism into action.

Colorectal cancer is the second-leading cause of cancer death in the United States. It’s also largely preventable if appropriate, regular screening tests — such as colonoscopy or stool-based tests including fecal immunochemical test (FIT) — are used to detect precancerous growths or cancer in its earliest, most treatable stages. But despite multiple ways to screen for colon cancer, African Americans remain nearly 20% more likely to get colorectal cancer and are at higher risk of dying from it.

Making inroads meant addressing mistrust about healthcare

African Americans’ outsize colon cancer risk is driven by a combination of socioeconomic factors and what Dr. Kling calls historical mistrust and trauma surrounding healthcare. Though a colonoscopy remains the gold standard, FIT tests are much less costly and can be self-administered at home. FIT tests’ relative portability and accessibility also make them suitable for a pilot program designed to begin addressing colorectal cancer and other health disparities.

In short, the FIT pilot offered exactly the kind of challenge Mayo Clinic’s Commitment Against Racism initiative is designed to tackle. Introduced in 2020, the Commitment Against Racism aims to eliminate bias in medicine and increase underserved populations’ access to Mayo Clinic resources. For Dr. Kling and her 18-person project team — a multidisciplinary group spanning the Department of Internal Medicine, Office of Community Relations, and Mayo Clinic Comprehensive Cancer Center — connecting the Commitment’s goal to real-world outcomes meant establishing one-on-one community relationships and finding new ways to build trust with a historically underserved population.

To succeed, Dr. Kling says, the team needed to “address mistrust issues, so that folks know we’re not here to just fly in and save the day. We want to acknowledge the history and ultimately figure out how we can repair wounds so that everybody has equitable access to care and resources.”

Enter Diana Y. Grijalva. A clinical research coordinator on the project team, Grijalva understood immediately that success would depend on creating and nurturing face-to-face relationships in the 7 to 8 churches participating in the pilot.

“I come from a small border town, Douglas, Arizona,” Grijalva says. “Little by little, I started integrating myself into bigger cities, always with the same goal of trying to help out in underserved communities. I’ve worked with a lot of people who are uninsured or just have mistrust about healthcare.”

Recognizing that potential participants may have had disappointing — or worse — healthcare experiences, a Mayo Clinic Office of Community Engagement team connected with Phoenix-area churches to “figure out ways that we could help and be really, actively engaged” with both participants and their places of worship, says Dr. Kling.

The Office of Community Relations team, led by Mr. Marion Kelly, proved instrumental in connecting project team members with predominantly Black and African American churches. But from the outset, it was clear that posting flyers on church bulletin boards and getting mentions in church updates wouldn’t be enough to drive significant enrollment. Project team members including Denise Johnson, Community Engagement Coordinator, hosted events to talk about screening and solicit enrollment, the importance of building trust and talking one-on-one with potential participants became more and more obvious. “I generally make it a point to go to every event,” says Grijalva, “and also to be there in the church. That’s one way we build that trust. Or if the church has things like health fairs, we’ll collaborate and see how we can meet people and help.” Mr. Kelly agrees: “Mayo Clinic has learned over the years that real community engagement is not only showing up during a campaign, but being here for the long haul, providing education, identifying access routes, and the importance of providing resources.”

Sidestepping potential health insurance issues and listening to participants

Health insurance also loomed large as a potential sticking point. While Dr. Kling acknowledges the “myth that all folks from marginalized groups are uninsured,” she says that “our goal was to try and make sure health insurance wasn’t a barrier,” a decision ensuring that the pilot was open to all interested participants.

Since communication and follow-up were critical to proving Mayo Clinic’s commitment, nursing support staff proactively discussed FIT test results with participants. A participant’s concerning test results prompted follow-up from one of Mayo Clinic’s patient navigators, who worked one-on-one with the participant to develop a follow-up care plan.

As the pilot gained traction, the importance of including follow-up coverage for uninsured participants became obvious. The Clinical Practice Committee agreed to cover follow-up colonoscopy costs.

The project team also worked with a health disparity research expert, developing a survey that gathers feedback about participants’ experiences navigating healthcare, screening for colorectal cancer, and any impact of racism in previous healthcare encounters. Beyond helping the pilot team understand more about healthcare experiences, Dr. Kling thinks future project teams can apply the findings to their own community engagement efforts.

A marathon, not a sprint

Since the pilot was the project team’s first step into this kind of community building, team members expected a few speed bumps. Initial enrollment was slower than hoped, but both Dr. Kling and Grijalva point to pivots and lessons learned that they believe will pay dividends as the FIT pilot moves into its second phase.

“A big part of this is recognizing that community building is a marathon,” says Dr. Kling. “It takes a long time. It’s not ‘one and done.’ It doesn’t work to just set up a meeting and go, and that’s it. This is really something we have to continue to foster and be patient with and grow.”

Grijalva echoes Dr. Kling’s thoughts. “We’re a work in progress. The community is really in charge of what we do. They’re the ones who understand what’s actually necessary for this to work. It’s really building the relationship using partnership.”

The now-ubiquitous QR code would also prove to be a valuable tool, an easy way for churchgoers to learn more about the pilot, express interest, and preregister for a FIT kit and follow-up. The QR code also became an effective way to share information with other churches and community members.

Now that all participating churches and their respective leaderships are familiar with the project, team members plan to make additional in-person visits to talk with attendees about the FIT test, the importance of screening and the project’s overall goals. They’re feeling more confident about hitting the project’s goal of distributing 450 FIT kits — and excited about reaching 450 people in underserved communities who might not otherwise be screened for colorectal cancer.

And though the project’s most obvious goal is reducing colorectal cancer in an underserved population, Dr. Kling sees an even larger possibility for Mayo Clinic in Arizona. “Our initiative is to really engage and make sure the community knows that we’re here to serve everybody,” she says. “There are lots of care practices and centers in the Phoenix community. But, despite people having access to those, there are still challenges and disparities. So this community-engaged model tries to address that gap by meeting people where they are and asking them what they need. The amazing care we provide at Mayo Clinic is not just for a certain, select group. It’s for everybody.”

– Brian Jones, Mayo Clinic Press