ITHACA, NY -- In 2012, Bob Riter, then the Executive Director of the local Cancer Resource Center, and Robert Weiss, a Professor of Molecular Genetics at Cornell, met to discuss an interesting dilemma. From his own experiences as a graduate student in cancer biology, Weiss reflected on how odd it was that scientists-in-training never interacted with the people who are affected by what they were studying. Riter saw the same was true from the opposite side. Many cancer patients and survivors also wanted to connect with students to learn more about their disease and speak with the future leaders of the field.
As a result, Riter and Weiss formed the Cornell Community Cancer Partnership to bring students, researchers, and community members together for weekly discussions about cancer. But while other organizations had been developing similar programs at that time, “I think what was really unusual is that this was not a one-shot deal,” said Riter.
Now in its ninth year, the program is still going strong. The partnership recently held a two-day workshop where members listened to lectures from a variety of different fields, such as an economist who talked about the price of chemotherapy drugs, a filmmaker who examined what breast cancer treatments actually look like, and a researcher who studies the impact of health equity on care. Brittany Schutrum, a PhD student in Biomedical Engineering, said that the multidisciplinary approach was part of what drew her to join the program. “I spend my whole day thinking about the biological aspect of the disease,” she said. “I wanted to use this opportunity to learn about the sides of cancer I do not often consider.”
Alongside listening to lectures, students interview the community members to learn about the disease from their perspective, which Weiss says is usually the part that students remember most. “When you hear an individual’s story and what challenges they had to deal with, I think that really makes it sink in,” Weiss said. Riter acknowledged that another important part of the interview is to serve as a safe space for students to practice speaking with cancer patients and survivors. For example, “while it is often a reflex, a person recently diagnosed with cancer doesn’t want to hear ‘don’t worry, you’ll be fine,’” Riter said.
For her interview, Schutrum was paired with a woman who is a university professor and professional artist. “My biggest takeaway from our conversation was an understanding of how overwhelmed she was upon first getting her breast cancer diagnosis,” said Schutrum. “This experience allowed me to take a glimpse into the real lived experience of someone who has a disease I normally only view through a microscope.”
An additional goal of the Cornell Community Partnership is to encourage and help other institutions start similar programs. Research fellows Andrew Sinkoe and Mia Spezia attended the Cornell workshop to get ideas for their researcher-patient partnership at the National Cancer Institute (NCI) in Washington D.C. “This was one of the best events I’ve ever gone to in my career,” Sinkoe said. “It confirmed that it’s a good thing we are forming this partnership at the NCI because it can be very helpful for everyone.”
Spezia added that meeting patients can not only be very motivating for scientists but can shape what they choose to study. “We can’t minimize the fact that patients have a lot of insight in terms of what research is needed and what’s missing, because they’re living this experience,” she said.
Susan Boutros is one of those people, who found a dearth of research when it comes to patients who have been diagnosed with Lyme disease and cancer. As a participant in the Cornell program, she loves getting to speak with the next generation of researchers. As a scientist herself, she also knows the great value in helping science trainees realize the magnitude of their research beyond trying to get grants and funding.
“With programs such as this one, it brings humanity into the training,” Boutros said. “Hopefully that will stick with people and they will realize that the purpose of their research is, or should be, to improve the health of people who have lives, who have hopes, and who have dreams.”
For more information about the partnership, you can check out their website at https://blogs.cornell.edu/cancercommunitypartnership/