The AACR Scientist↔Survivor Program® Brings Together Cancer Researchers and Advocates
Survivors and advocates learn from the scientists, and vice versa, in a long-running program that builds enduring partnerships.
In the cancer world, there are scientists who try to understand the disease and how best to treat it, and there are survivors and advocates affected by the disease. Bringing the two groups together to learn from one another and advance lifesaving science is the mission of the AACR Scientist↔Survivor Program®, which celebrated its 25th anniversary in 2023.
The program sprang from the patient advocacy movement of the early 1990s and was directly inspired by the success of the 1998 March to Conquer Cancer Rally in Washington, D.C. Shortly after the march, Margaret Foti, PhD, MD (hc), the AACR’s chief executive officer, and Anna D. Barker, PhD, FAACR, a biotechnology executive and member of AACR’s Board of Directors, and subsequently a top official at the National Cancer Institute began discussing ways to harness patient advocates’ energy and commitment.
“Marge and I wondered how we could begin to create a bridge to develop two-way communication between the scientists and cancer survivors and advocates. So, we founded the AACR Scientist↔Survivor program®,” recalls Barker, now chief strategy officer for the Ellison Institute of Technology in Los Angeles and Oxford, UK. “Patients are now directly engaged in meaningful ways in cancer..”
It was Barker’s suggestion to symbolize the program with an arrow pointing both ways.
“The broad vision of the program was to bring together scientists and patient advocates to discuss issues in the field and to forge new partnerships and collaborations,” Dr. Foti says. “The double arrow, going back and forth, was Dr. Barker’s idea to show that there would be an impact on both constituencies.”
The program’s home base is the AACR Annual Meeting, a huge gathering of scientific talent from all over the world, but it has expanded to include the AACR’s broader patient advocacy initiatives, including regular Patient Advocate Forums that take deep dives into key topics in cancer research.
Each year, a class of about 40 patient advocates and survivors is selected through a competitive application process to attend the AACR Annual Meeting. Most attendees have some previous experience with advocacy groups and are eager to take a broader view of cancer research. They attend special lectures at the Annual Meeting, participate in discussions, work their way through cancer and advocacy topics in small groups, meet with scientists who have volunteered to be mentors, and complete a capstone-style presentation based on a challenge question.
The advocates are there partly to enrich the other organizations they’re a part of, whether they are small volunteer groups or behemoths of the cancer community.
“The survivors and advocates take their learning back to their constituencies,” Dr. Barker explains. “They write blogs, make presentations, write op-eds, and sometimes redesign their education programs based on things they take away from the Annual Meeting.”
“It’s an ‘evergreen’ and expansive process—one survivor/advocate can educate and inform many,” she says. “Many of them stay in contact with their mentors and, in select cases based on the knowledge gained at the AACR Annual Meeting, become involved in the research process through areas such as clinical trials planning and enrollment.”
As of the 2023 AACR Annual Meeting, 1,139 patient advocates from 28 countries have participated in the program, along with 266 scientific mentors – 17 Presidents of the AACR among them. All told, more than 400 cancer organizations have been involved, impacting more than 1 million members of the patient advocacy community.
“This program helps survivors and advocates understand that research is challenging, difficult, and complex,” Dr. Barker said. “It also has encouraged cancer centers and other research organizations to embrace survivorship and understand that it’s a learning process on both sides.”
Participants from both scientific and cancer advocacy communities agree that the program changes their perception of the struggle against cancer and their respective roles in it.
“AACR really exposed me to all the different routes you could take to being an advocate,” said Roberta C. Gelb, a breast cancer advocate from New York.
“Everything is about relationships,” said Lanette Veres, a brain cancer advocate from Arizona. “So if I can bring the patient perspective and gather the research perspective, I think that is a great thing. I think that is empowerment.”
“We don’t have PhDs, OK?” he said. “We have the life experience, and the life experience really is important in this game of solving the jigsaw puzzle of cancer.”
Doctors and researchers also find the program brings them closer to understanding the needs and concerns of survivors and advocates.
“That relationship is bidirectional,” said Brian M. Rivers, PhD, of the Morehouse School of Medicine in Atlanta. “I am learning just as much from the survivors as the survivors are learning from me as a scientist.”
The program has had solid results across the spectrum of advocacy, Dr. Foti said.
“Patient advocates have been very active in helping to design clinical trials, increase funding for cancer research, and educate the public, and give them a better understanding of what they need to know in order to strengthen their opportunities for survival and health,” she said.
The program has given new meaning to many of those struggling to make sense of their own cancer experiences.
“For the first time in over 25 years,” said Alicia Staley, a breast cancer survivor from Boston, “I felt that my personal cancer experience meant something, and my advocacy would continue to have an impact.”
The AACR’s enduring commitment to building bridges between patient advocates and cancer researchers to advance lifesaving science is embodied by this important and growing program.
“I think that the AACR Scientist↔Survivor Program® is going to become ever more critical as we move forward, with research advances that create new questions and shared issues,” Dr. Barker said. “But this partnership will continue to enable dialogue and learning that will enable progress in ways that we could not have imagined 25 years ago.”