Community Collaboration Fuels a Compelling Grassroots Perspective

Oct. 19, 2023
K Mustian and P Freeman_reduced size
Rev. Patrina Freeman and Karen Mustian, Ph.D.

The first time Karen Mustian, Ph.D., a Wilmot Cancer Institute research leader, met the Reverend Patrina Freeman and a group of community advisors, she was so moved that she wept.

“I didn’t expect it,” Mustian recalls. “I came home from the meeting that night, I turned to my partner to describe what we had talked about, and I actually had tears streaming down my cheeks.”

“I had not had that feeling — that powerful thing of being reminded of why we do this work — since years ago when I was just starting my PhD program and I interviewed a cancer patient for the first time,” she adds.

Freeman, an ordained minister at Helping Hand Missionary Baptist Church on Joseph Avenue in Rochester, touched a chord. She is part of a large group of people who comprise Wilmot’s Cancer Community Action Council (CCAC), providing a much-needed grassroots voice to Wilmot’s endeavors. Sometimes, their voices can spur necessary uneasiness.

“I really like talking to researchers about the fact that you have to know your own culture as well as someone else’s culture before you can move forward and be successful,” Freeman says. “There are many nuances and also some elephants in the room. We have to recognize them and celebrate it. That’s what makes it fun and rewarding.”

Community engagement, done right, can have a major impact on cancer care and scientific advances. Wilmot’s Community Outreach and Engagement (COE) office is facilitating more of those inspirational moments between folks like Karen Mustian (Freeman calls her “Dr. Karen”) and CCAC members. In this case, Mustian was seeking input from Freeman and others on a National Cancer Institute grant involving yoga as a way to reduce pain among Black cancer patients.

Mustian has been studying this topic for years and has risen to the top of the field. She’s completed several nationwide clinical trials on yoga and cancer, and was involved in writing national guidelines for patient care. But, she admits, all of her work had a flaw — the accrual of Black individuals to her clinical trials has been almost non-existent. As a yoga enthusiast in Rochester, Mustian also noticed that few Black people join local classes.

“Yoga works for people facing cancer, but we’re not meeting the needs of underrepresented groups across the country, and most importantly, right here in our backyard,” Mustian says. 

Freeman was happy to share some reasons why.

“Yoga can have Eastern medicine and religious associations that are a turn-off for Black and brown communities,” Freemans says. “I was able to explain the understanding of ‘religion’ to her among African Americans. For example, when we say ‘church’ we aren’t talking about just Christian churches. And when we say ‘faith’ it doesn’t always imply Christianity. It can mean spirituality or our walk with God. Our church is what helped us make it through slavery and into the post-civil rights era.”

Freeman adds: “I told Dr. Karen, I would love to sit with the clinical trials screeners as they’re recruiting people for studies and show them that words really matter. Understanding the fear and apprehension Black folks have about health is so important. You need to know your audiences.”

Mustian says Freeman stirred her passion and opened up new possibilities. They are working together to design and conduct a pilot study using yoga to help cancer survivors in Rochester’s Black community. It will likely will be conducted in the basement of Helping Hand Missionary.

Mustian’s standard yoga program is being culturally adapted and, thanks to Freeman, was renamed “SOUL Yoga.” The S stands for “strengthening,” the O for “openness,” the U for “uplifting,” and L for “letting go.”

The pilot study will provide critical data for an NCI grant.

“Knowledge comes in all different shapes, sizes and from different backgrounds,” Mustian says. “My experience with Patrina and the CCAC proves that they are smart and know far more than we do about many, many things.”