In Kristin’s Words: A Patient Perspective on Research

Ocular melanoma patient and advocate Kristin Nocco recently participated in a first-of-its-kind patient review process to determine the recipient of OM research funding.

My name is Kristin Nocco. I live in Philadelphia, was diagnosed with uveal melanoma in February 2013, and was treated that same week with plaque therapy at Wills Eye Hospital. Genetic testing showed that I have a 30% chance of metastasis. My diagnosis and treatment happened very quickly, and I honestly didn’t have very much time to comprehend my diagnosis. In the three years since, I have attended many conferences and patient meetings to gain a much better understanding of the rarity of my disease, its prognosis and how the researchers are trying to identify better predictors of disease, as well as better treatments. I have met amazing researchers, doctors and more importantly patients going through what I was going through and am amazed at the progress that has been made in our rare disease. Sometimes it’s just a glimmer, but it’s better than nothing. 

At the 2016 Melanoma Research Foundation (MRF) patient and caregiver meeting at Emory, we were presented with an opportunity to review research papers as a lay person. As a pharmacist by training, I am comfortable with understanding research and reading research papers and thought this was a great opportunity to give a patient perspective on research that very well may improve my life. I was in!

The folks at the MRF set up two conference calls for the review process. The first call was for us to understand our role and expectations, and the second to walk through summaries of research proposals which were already vetted for scientific merit and presented by Dr. Keith Flaherty, Co-Chair of the MRF’s CURE OM Scientific Steering Committee. It was nice that they had vetted the papers and pointed out the strengths/weaknesses on the factors typically evaluated for research proposals: significance, investigators, approach, innovation, and environment. As a patient, these summaries were like “cliff notes” versions of the proposals, and allowed me to have a better understanding of how the research would happen and what the expected results were.

I was happy to be part of the process because it is my disease and the MRF supports both research and patients. To have my voice heard is a valuable step in being part of a solution to this disease and allowed me to understand how much time is spent trying to come up with a research protocol based on other findings and/or new ideas. The one study was basic science research, while the other was more applied. Both are important and advance the science, so being able to have input was a great opportunity.

There are many folks that I have met who like the research aspect of this disease and can help explain the statistics or latest findings to others. For those folks, if they choose to be part of the research process that is fantastic. I know for me, this made me appreciate the complexity of the research process and the amazing amount of time and effort that research teams put into a proposal, and the time they will put into the actual study if it gets funded. I hope this process continues for those that wish to participate.

Since OM is an orphan cancer, there isn’t much money to be had from government sources. Organizations like the MRF further research that may otherwise not be funded. If they fund a bench research grant, and the research goes well, researchers may then get federal funding for a follow-up study. I feel that MRF funding is about hope. As the scientific community has new ideas about this disease and how new drugs may work, it has to be tested- hence clinical trials. Through the rigorous vetting process of the physician reviewers and input from patients like myself, we can all be part of moving the process forward. 
 

Kristin Nocco is an ocular melanoma patient, advocate and member of the inaugural CURE OM patient review panel. This panel provided feedback and the patient perspective to determine the recipient of the 2015 #CUREOM Unite! Established Investigator Award.