The Karmanos Cancer Institute is not only helping patients become survivors, it’s also helping them and their family members become advocates for lifesaving cancer research.
The Karmanos Cancer Advocacy Program (KCAP) trains survivors and their family members to help direct Karmanos cancer research initiatives, review grant proposals for research studies, and become involved in volunteer-led action groups that impact the future of cancer care.
“Since cancer survivors and their family members are our most important stakeholders, it’s important that they remain engaged with cancer research efforts and organizations like the American Association for Cancer Research,” says Elisabeth Heath, M.D., FACP, associate center director of Translational Sciences at Karmanos and KCAP creator. “Survivors are the ones who should direct research efforts. They share with researchers what they want us to focus on, not the other way around.”
KCAP, which launched in July 2018, is an outgrowth of the successful Prostate Cancer Advocacy Group (PCAP) at Karmanos, which began eight years ago. Using PCAP as a model, KCAP focuses on breast, colon, lymphoma, lung, ovarian, and head and neck cancers.
Each month, KCAP’s 25 members meet to learn about topics like clinical trials, funding for research studies, cancer survivorship trends and more. Dr. Heath and Cathryn Bock, Ph.D., associate professor of Population Science at Wayne State University School of Medicine, lead the training sessions.
Once the year-long program concludes, KCAP members will be empowered to direct future cancer research. Advocates provide input as members of grant review study sections, participate in panel discussions at seminars on issues affecting cancer research, join advocacy groups, meet with government officials to discuss issues impacting cancer care, and more.
“A number of our PCAP advocates have participated in Lobby Day with the American Cancer Society Cancer Action Network,” Dr. Heath says. “Advocates meet with lawmakers in Washington D.C. to express their support for things like oral chemotherapy legislation. This is just one example of how advocates direct the future of cancer care. Our KCAP members will follow a similar game plan.”
Marcie Paul is a stage 3C ovarian cancer survivor and KCAP member from West Bloomfield who received treatment at Karmanos. She became an advocate for ovarian cancer education, awareness and support in 2011, when she helped build the Michigan Ovarian Cancer Alliance. She’s also participated in numerous ovarian cancer research advocacy groups, advocates for cancer research funding on Capitol Hill and is the co-chair of the Karmanos Patient and Family Advisory Council. As a consumer reviewer with the U.S. Department of Defense—a major funder of national cancer research—Marcie provides input on the merits of individual research grant applications.
“Advocates are indispensable to furthering the cancer research process,” Marcie says. “I attend many conferences and frequently meet researchers who have never before met with cancer survivors. Invariably, they’re extremely gratified to talk to us. Researchers find the discussions informative because survivors and their family members are willing to share their unique perspective on cancer research priorities.
“I’m an advocate because there are so many other ovarian cancer patients who are no longer here or not able to do this kind of work. I’m one of the fortunate ones who can speak on their behalf. I want to ensure that current and future patients have the same kind of world-class treatment I received at Karmanos.”
For more information about a cancer services and ways to get involved, call 1-800-KARMANOS (1-800-527-6266).