Your Legacy: An Interview with Patient Stakeholder Ron Nelson
Prostate Cancer survivor Ron Nelson is one of seventeen patient stakeholders supporting the COMPPARE study. What exactly is a patient stakeholder? What’s in it for them? Ron had some insightful and surprising answers to our questions about his role in the study and his personal interest in the outcome.
COMPPARE: Ron, can you explain the role of a patient stakeholder?
Ron: I can now, but to be completely honest, when I was invited to be one I was clueless about it. I have no experience with scientific studies, let alone a major national one like COMPPARE, and I found it hard to imagine what I could possibly contribute. My wife’s advice was to accept the role and figure it out later, so that’s what I did.
COMPPARE: So what did you figure out?
Ron: What I quickly learned is that, while a study like this is conceived, devised, and conducted by skilled researchers and medical professionals, they lack a key element: patient perspective. Of course, the whole point of this project is to provide new information for future patients. Well, how can you tackle a major patient-centric research project without feedback from patients who have “walked the walk?”
As I see it, the job we patient stakeholders have is to provide input and guidance to the research team regarding how to communicate effectively with patients, encourage patient enrollment, and keep participants informed and “in the loop” going forward. After all, they deserve to be kept apprised because without them there is no study.
COMPPARE: As a survivor treated about nine years ago, you are essentially done with prostate cancer and have earned the right to put it behind you and get on with your normal life. Why do you and the other stakeholders devote valuable time to this study?
Ron: Good question—one I’ve asked myself many times. I have a wonderful family, hobbies, and interests I want to enjoy and explore. Why take any time away from those pursuits? As you said, I did indeed want to put cancer behind me and get back to normal. But that’s not exactly how it works. “Normal” changes. Even when we are cured, we never really put cancer behind us. We empathize with current and future patients and want to help them.
COMPPARE: What makes it personal?
Ron: I have four daughters and no sons, so you might think it wouldn’t matter so much to me. But I have sons-in-law, grandsons, a brother, brothers-in-law, and friends. Any of them could end up like me…wondering how photon and proton radiation compare, but finding no definitive answer. Hopefully the COMPPARE study will give them that answer, but only current patients can volunteer and provide the data. While I can’t do that, as an official stakeholder at least I can put in my two cents and help a little. The bigger commitment is from the men who have stepped up to the plate and agreed to provide data for five to ten years for the sake of future guys like us. My hat’s off to them.
Ron welcomes your questions or comments. Contact him at Ron@ProtonsExposed.com. You can also subscribe to The After Proton Blog: Perspectives on Protons, Prostates, and People.