Bringing community voices into cancer research
Cancer is one of the leading causes of death in Minnesota, with the data showing that almost half of all Minnesotans will be diagnosed with cancer at some point in their lives. While statistics like these might sound scary, people and businesses across the state are rising to the challenge, including all of us here at the Masonic Cancer Center (MCC), University of Minnesota. In response, MCC’s Community Outreach and Engagement (COE) team and the Minnesota Cancer Clinical Trials Network (MNCCTN) launched the Community Advocates Program. This program helps ensure cancer research is shaped by the people it aims to help: Minnesotans from all backgrounds and across all communities.
What is the Community Advocates Program?
The Community Advocates Program brings together people from across Minnesota who care deeply about health, cancer, and equity. These advocates come from many walks of life. Some are cancer survivors; others are caregivers, retired healthcare workers, or public health professionals. But they all have one thing in common: They bring valuable personal experience and cultural knowledge to cancer research.
Advocates give feedback on study materials, help improve communication with communities, and share ideas that help make cancer research more welcoming and easy to engage with. They work closely with researchers and staff and are involved in everything from reviewing grants to shaping educational brochures.
Michiah Van Syckel, one of the program’s leaders who works with MNCCTN, says, “Advocates lend their personal experience and expertise to our research and outreach work to make it more inclusive and accessible to all the diverse communities in Minnesota.”
Why it matters: Real impact, with real stories
Many groups in Minnesota—especially communities of color, immigrants, and rural residents, who we often refer to as living in “Greater Minnesota”—face real barriers to cancer care and clinical trials. The Community Advocates Program helps break down those barriers.
Susannah Bartlow, another program lead working with MNCCTN and the COE team, explains, “Community-engaged research is a real priority for the Masonic Cancer Center. It’s not only a best practice; it’s essential to make sure our research works for everyone.”
The Community Advocates Program helps make research more fair, more useful, and more trusted by the people it’s meant to serve. And the program is already making a difference! Michiah shared one example: “Our Advocates helped design a new brochure that covers the same information as older materials, but in a way that’s much more friendly and easier to understand.”
Susannah highlighted another success: “Our Advocates told us that communities need more support for local research. Because of their feedback, we were able to increase funding for a research development grant that will help community organizations partner directly with researchers to develop studies that meet their needs.”
These examples may seem like small changes, but they add up to big improvements in how cancer care reaches people across our state.
Meet two of the Advocates
Lisa Beckendorf has worked with national cancer groups like the National Cancer Institute and PanCAN. Joining the program was a way that she could focus on bringing that advocacy directly to her home state.
"From day one, our mission has been to meet the needs of all communities across Minnesota," she says. "By working with trusted messengers and working both within and beyond the Twin Cities metro area, we help make sure everyone has equal access to information and education."
Phitsavath (Phitz) Nantharath brings deep experience in health education and public health. Her academic work explored how traditional Lao herbal medicine could be integrated with modern healthcare. "This role lets me support communities of color and immigrant families in a meaningful way,” she says.
“It’s not just about inclusion, it’s about transformation," adds Phitz. "This program ensures that cancer prevention and care are grounded in respect, equity, and cultural understanding."
What's next for the Advocates?
The program has big goals for the future. As Michiah says, “Little changes—like a sentence tweak in a grant or better wording in a study—add up! Over time, they help build better research and healthier communities.”
Susannah agrees. “We want community members involved at every step, from coming up with research ideas to sharing the results,” she says. “And we want Advocates to be the ones who lead this program as it grows.”
For both Susannah and Michiah, as current program leaders, purposeful engagement from program participants means building trust and sharing power. “To me, it means that we need to actively demonstrate the value of community knowledge to our participants,” Michiah says. “That’s why we pay Advocates for their time, and we try hard to use their feedback in real ways.”
Susannah adds, “This program is also about creating space where people can show up as their full selves. Our Advocates told us they feel their cultural authenticity is welcomed here. And while it’s definitely an ongoing process, that is really powerful.”
The Community Advocates Program is helping ensure cancer research and care reflect the real needs of Minnesota’s communities. Find out more about how to get involved!
Did you know you can make sure your donation goes directly to meeting the needs of communities across Minnesota? Make a gift to our community outreach and engagement fund today. Prefer to give generally to MCC? Donating to our general fund means we’ll make sure your dollar reaches the MCC programs that most need it.