A local nonprofit, the Cancer Resource Center of the Finger Lakes (CRCFL), has developed a program to connect its clients with cancer researchers from Cornell University.
Bob Riter, Executive Director of CRCFL, was inspired to create this program after participating in cancer research review panels. He saw that scientists often found it difficult to describe their research to people outside the scientific community. This led Riter to realize the importance of establishing a relationship between “researchers-in-training” and patients. He said: “Very few scientists have an opportunity to get out of their laboratories and meet individuals directly affected by the disease they are researching. This project is designed to make that happen.”
Since June 2013, CRCFL has offered monthly research seminars. These seminars allow doctoral and post-doctoral students to present their findings to clients including, patients, caregivers, and family members. The students lead a discussion based on their research and learn how to explain their work in lay language. Although, it can pose as a challenge, Riter, as well as collaborating Cornell faculty, feel it is an important skill. Bob Weiss, a professor of molecular genetics and a key component to the program, said, “One responsibility as scientists is to be able to spread your knowledge and make it clear why what we’re doing is important.”
PhD student, Nora Springer, has always wanted to her research to make a difference. “Leading a discussion is a very humbling experience,” she said, “Interacting with the Cancer Resource Center clients has been a great reminder of my goal.”
Even if researchers are not leading the discussion they still have the opportunity to learn from their peers. “Scientists are a community of niche researchers,” Springer said, “We need to come together to share ideas and brainstorm in order to make connections between different fields and make progress.“
Along with developing communication skills researchers also learn to see cancer from a different perspective. Prior to the program, many students were focused on cancer solely as a disease to cure. The interaction with patients has given researchers the chance to understand the issues cancer patients are facing. Weiss said, “It’s one thing to read about it in a book, it’s another to hear from someone who’s experienced it.”
The collaboration between scientists and patients does not stop at monthly seminars; researchers can also meet with patients at support groups offered by CRCFL. Jason Hungerford, a cancer survivor and current CRCFL volunteer, said: “They bring a different level of awareness to the groups. They often try to explain what different things mean or why a doctor may have decided upon a certain course of treatment.”
The open discussion with researchers has allowed clients to learn about the information in a relaxed setting. Sarah Ross, a client of CRCFL, said: “The only question I’m likely to ask in my oncologist’s office is when and where my next appointment is, but I am not uninterested in either my care or cancer. These scientists have given me a regular, understandable dose of hardinformation.” Receiving this type of clarity can be rare for many cancer patients, and at the same time, the opportunity to offer clarity can be rare for researchers.
This collaboration between scientists and those affected by cancer is a one-of-a-kind experience. The constant and continuous communication between both groups is what makes this program unique. Both Riter and Weiss have not heard of programs similar to the one of their own creation, however, they are confident it could be successful in other communities.
Those involved in the program would like to see the program’s impact spread beyond the Ithaca community. “I hope this program inspires similar programs at research universities and hospitals,” Springer said, “Also, I hope universities and researchers will start recognizing the importance of community outreach.”