The Future of Cancer Research: My Role

As I wrote last time, government funding for cancer research has been on my mind lately, and for good reason:

Last week I was a Consumer Reviewer for the U.S. Department of Defense's Peer-Reviewed Cancer Research Program.  That means I had a part in deciding on funding for some major cancer research projects. It was a very cool experience, and I didn't write sooner because there is a strict confidentiality agreement, and I needed to make sure I wasn't saying anything I shouldn't. Most of what I'm telling you here is based on publicly-available information. I'm not giving out any secrets.

The PRCRP is part of the Congressionally-Directed Medical Research Programs. The U.S. Congress gives the Department of Defense (in addition to the money it gives for things like paying soldiers and buying submarines) a big chunk of money to for research that benefits active military, veterans, and their families. This year, the PRCRP had $110 million to distribute for cancer research. Unfortunately, some members of the military are more vulnerable to certain cancers because of things like environmental factors for where they are deployed. So the program makes a priority of funding research for patients in the military. However, because the research is tax-payer funded, it is also valuable for civilian patients, should the research lead to treatments or other positive outcomes.

My job in all of this was as a Consumer Reviewer. All of the proposals written by cancer researchers were divided up, and teams were assembled to look at groups of proposals. Each team was made up of experts -- cancer researchers, oncologists, and other specialists -- as well as one or two Consumer Reviewers. These are cancer patients and survivors. Our job was to bring a different kind of expertise -- the perspective of someone who has lived through the experience of having cancer. We did this by discussing the impact that the research would have on patients' diagnosis, treatment, and quality of life. A cancer researcher can look at a proposal and say "The science behind this research is really solid and innovative." But only a cancer patient can really say "This research might be great, but let me tell you how it might affect someone as they are going through the treatment so we can figure out if it's worth the cost."

That's what makes this program so great -- not just that they are funding research for all kinds for cancers, but that they ask patients and survivors to be an important part of it all. The director of the CDMRP, Colonel Sarah B. Goldman, said “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and
advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant." 

Some of the grants were for projects that would need over $1 million to happen. So it was a big deal. And even though I was a patient and not a scientist, my vote counted as much as anyone else's. Very cool.

I have to say, I'm very careful to remind you all that I am not an oncologist or a cancer researcher, and I was reminded of that every minute of the meetings. I think I do a decent job of understanding the science of cancer well enough to explain it in general terms to other non-experts like you. But my head was spinning trying to follow some of the conversations taking place. I did understand it all, but it only increased my admiration for scientists and doctors. I know a decent amount about Follicular Lymphoma, but I wasn't necessarily reading grant proposals about FL.

And, again, I wish I could give you more detail about the work I was doing, but I can't. I will say, though, that there was one particular instance where I felt like the other Consumer Reviewer and I were able to give a patient perspective in a really meaningful way, and I think it might result in a lot of cancer patients being helped. There was a lot of time and work that went into this experience, but that one instance made it all worth it for me. I did my job. I represented patients.

So while I can't tell you about any of the projects that I saw, I can tell you this -- there are a lot of very smart and very passionate people working on solving all of the puzzles that make up cancer. If even just some of the projects we looked at end up being successful, a lot of cancer patients' lives are going to be better in the future. And if this small group of researchers and scientists and doctors are anything like the people working on Follicular Lymphoma research, we're all going to be part of that group of happier patients.

Pretty awesome. I'm really glad that I got to play a small part in it.