Cancer can feel as if you're stranded on a desert island. Once you’re there, you wonder “Where can I go? Who out there can save me? Why me?”

Cancer Action Councils help answer some of those questions for people with cancer and their caregivers. Developed by the Barbara Ann Karmanos Cancer Institute’s Office of Community Outreach and Engagement based on a model established in New York City, CACs offer an important human connection for those affected by cancer. They also, crucially, plug survivors and caregivers into the health research process, giving them a community-centered voice in health outcomes.

The COE office has so far helped launch about a dozen CACs within Karmanos Cancer Institute’s 46-county catchment area. The groups meet monthly, either in person or virtually, for fellowship and facilitated talks about cancer, its impacts, opportunities for research and available resources. Through those meetings, the groups evolve into community conversations about cancer and the research aimed at improving outcomes in each CAC’s community.

Groups serve specific locations or communities like the LGTBQ CAC or the Black Men’s CAC. The councils form the heart of Michigan Cancer HealthLink, which aims to bring together community members and cancer researchers. The HealthLink Model looks to the community served by researchers to help set priorities for the research that directly affects that community. The CACs set those priorities.

CAC members have all been through or are going through the Building Your Capacity curriculum, which was adapted by the COE staff from the original course used at Tufts University. BYC educates community members about how researchers design and carry out research, ethical considerations for research, advocacy and more. Between the fellowship of the meetings and the BYC training, council members:

• Gain an understanding of how cancer affects communities across Michigan.
• Serve as crucial voices in conversations with cancer researchers about research that can benefit communities.
• Learn how to partner with cancer researchers to develop and fund projects and programs.
• Work to address cancer-related health needs in their communities.
• Set priorities for future cancer care research and funding.
• Improve access to cancer care.

The ACCESS CAC in Dearborn offers an example of the impact the groups can have. Some of the CAC groups have anchor community partner organizations. For this council, it’s the Arab Community Center for Economic and Social Services, the largest Arab American human services nonprofit in the United States. ACCESS has a big presence and strong reputation in Dearborn, a city with the largest Muslim population in the United States and a majority of residents claim Arab descent.

“Having that backing is important because we’re able to make sure that we engage the community in a way that’s going to be receptive, in a culturally responsive way,” said Ali Fakih, one of three co-facilitators of ACCESS CAC with COE colleague Voncile Brown-Miller and Ghada Aziz of ACCESS.

The reception has been a welcome one.

“At ACCESS CAC, I was open and free to talk about my experience, about my cancer, what I felt, what I should do,” said Abde Mallah, a member of the council and a cancer survivor. “They do understand what I’m saying. They’ve been there. … So it made me feel more comfortable with my disease.”

Fakih and other COE facilitators have directly used feedback from CAC members to inform research, and develop programs and resources. For example, CAC members participated in research involving the financial burden of cancer care, as well as other topics. Discussion with members has also led to concrete action to improve the communities involved. ACCESS CAC members identified health and wellness as research priorities. COE partnered with the Cross Training and Physical Activity: A Better Life Experience program, bringing 12 weeks of free exercise classes to cancer survivors. COE and CAPABLE worked with the members to cater the fitness courses to community needs, holding focus groups to better understand those needs — and to help anticipate and ease any barriers to attending.

Fakih described the CAPABLE program’s sensitivity to the specific needs of the group. “It was an all-women group led by all-women instructors, and the turnout was amazing — to the point where they wanted it again and we are bringing it again this spring,” he said.

The COE office facilitates eight CACs, which engage more than 50 members. These include:

• LGBTQ CAC
• Black Men’s CAC
• Western Wayne CAC
• ACCESS CAC
• Metro Flint/Genesee CAC
• Young Survivors CAC
• Rural CAC
• Genomic Research Action Council

Each CAC works in conjunction with HealthLink facilitators who help facilitate meetings and set council agendas, and listen to feedback from members about the priorities of the communities those members represent. The CACs are an active, accessible way for survivors, caregivers and community members to feel empowered about their health outcomes. The experience, ultimately, helps them speak with authority about cancer research and care in their communities.

“You can cancel cancer if you get treated soon,” Mallah added.