Fight Colorectal Cancer (Fight CRC) research advocates are the most credible patient voice at the research table. Research advocates devote hours upon hours to online and in-person training to educate themselves on the entire colorectal cancer continuum, from prevention to survivorship. They are also passionate when it comes to seeking opportunities where they can contribute their experience and insight to research, ultimately representing and benefiting the greater colon and rectal cancer (CRC) community.
Wenora Johnson, a stage III colon cancer survivor who has been part of the Fight CRC Research Advocate and Training (RATS) team since 2015 has been a fierce voice. Wenora lends her expertise to support research and improving treatment options for all those affected by colon and rectal cancers. This past year, she was nominated and selected to serve on the United States Department of Defense’s Congressionally Directed Medical Research Program, Peer-Reviewed Cancer Research Program (US DoD CDMRP PRCRP).
This program is funded through Federal Congress, and every year, policy advocates storm the Hill at Fight CRC’s Call-on Congress to ask for this critical program to continue receiving funding and promote innovative colorectal cancer (CRC) research.
To fully understand the process and impact of programs like this, we asked Wenora to provide her insight into the process of grant review, challenges, and the impact these funding programs can have on cancer research.
Q&A with Wenora
Q. What is the DoD PRCRP?
A. The DoD CDMRP PRCRP is known as the Department of Defense Congressionally Directed Medical Research Program Peer Reviewed Cancer Research Program. Since Fiscal Year 2009, the PRCRP has been charged by the U.S. Congress to fund innovative basic, applied, and translational cancer research to support service members, their families, and the American public.
Q. How did you get involved in the DoD PRCRP grant review?
A. The process started when I was asked by the National Coalition of Cancer Survivorship (NCCS) to be a Consumer Review Panel nominee for grants being reviewed by the PRCRP. This process also involved me sending in my advocacy curriculum vitae (CV) along with a support letter from NCCS.
Once I was selected as a possible candidate, I was asked to participate in a 45-minute interview to discuss my cancer background, experience, and understanding about the peer-review process. My prior experience included reviewing white papers for Friends of Cancer Research (FOCR) and another organization who was reviewing guidelines for pathology, all of which helped me understand medical terminology.
After being notified that I had been selected for the PRCRP, which can take up to two months, I was notified that I would be working on colorectal cancer grants and the in-person panel review would begin in late November.
Q. How did the process work to review grants?
A. The process to become a consumer reviewer began with monthly calls to introduce the support staff, along with instructions on how the Peer Review process would begin before meeting at the final panel review.
Webinars and orientations were conducted and we gained access to research portals. Videos and presentations were also provided to make sure reviewers understood the process as a Peer Reviewer since this role is different than a Scientific Reviewer. This information was very useful and ensured we would critique and score the assignments in a fair manner.
Upon completing the assignments, I was ready for my in-person panel review. This was a strict two-day process, where I was with all of my PRCRP colleagues reviewing and casting final votes on research to be possibly funded by the DoD.
As a Consumer Reviewer, the two days consisted of being together with all participating parties in a specific area of research (for example colorectal cancer). Working together collectively and using a rating system, each possible awardee was reviewed – we (especially if you are a cancer survivor/caregiver serving as a Consumer Reviewer) had an opportunity to share our opinions in a roundhouse type fashion discussing why we felt a particular application was strong.
For me, this was a great opportunity to share with scientists that as a patient we are concerned about the quality of our life and not just living longer – this also includes understanding how side-effects from new drugs/studies will affect a patient. While everyone had an opportunity and were encouraged to voice their concerns, etc., we were also conscious of time spent discussing each grant submitted and if we had additional concerns, the Scientific Officer was there to assist us.
Q. What were some challenges involved with serving on a panel like this?
A. I believe as a Consumer Reviewer the biggest challenge is understanding terminology and medical language. It’s good to know that as the Consumer Reviewer you have help from an assigned Scientific Officer who guides you along the way.
Q. What was the biggest success in your opinion?
A. The biggest success is the gathering of like-minded individuals who all want a cure or better opportunity to eradicate cancer. When patient advocates/survivors can be in the room with doctors and scientists and be heard on the same playing field it is a success. Not to mention receiving an email that states that some of the applications you were on as a group was selected for funding!
Q. Why is it important that grants like these continue to take into account the patient perspective?
A. It’s imperative because, without the patient’s perspective, researchers may not understand that quality of life and not quantity of life is important for survivors. We want researchers to know that we appreciate all of their efforts in finding new forms of treatment, and the patient’s perspective will keep important research funded with new clinical trials on the horizon, bringing new treatments to cancer patients sooner.
Q. Why is it important that grants like these continue to be funded?
A. Cancer research is extremely important – with the statistics showing a 1 in 3 lifetime probability of getting cancer and over one million individuals who will be diagnosed with cancer in 2019, research grants allow researchers to understand this disease and how to fight it.
Understanding the genetic make-up and components of cancer and how the disease affects younger patients (early-age onset) allows for newer treatment options, such as immunotherapy and targeted treatment.
Q. Anything else to add that you think the CRC community would want to know?
A. The PRCRP is a great opportunity for a patient advocate, survivor and/or caregiver to understand how vital their input and participation is. I would recommend selected reviewers to create a personal reference binder for their use beginning day one, to help keep them organized and structured for the final Peer Review.
The experience is a very humbling and rewarding one as a cancer survivor and participant.
Did you know eight Fight CRC research advocates have served on the DoD PRCRP since 2011?
Want to advocate for the DoD PRCRP to continue it’s innovative and essential CRC research? This program is unique because it funds high-risk, high-reward research, and CRC-focused research must be reprioritized each year by Congress. Be sure to sign up for advocacy updates or take action on current alerts.