After overcoming cancer not once but three times, Wenora Johnson, a Navy veteran and administrative assistant for Chain Reaction Innovations (CRI), has taken to Capitol Hill to advocate for patients and families battling the same disease.
In December 2019, Johnson served as a consumer reviewer in the Congressionally Directed Medical Research Program’s (CDMRP) Peer Reviewed Cancer Research Program (PRCRP). The opportunity gave her a chance to chime in on future cancer research and represent the voice of the patient in those discussions.
“As a cancer survivor and patient advocate, it was one of the most rewarding experiences I’ve participated in – especially knowing that my participation will have a positive effect on the future and advancement of cancer research,” Johnson said.
Consumer reviewers help evaluate research applications submitted to PRCR. Representing the collective view of patients, consumer reviewers weigh in on how proposed studies could affect diagnosis, treatment and quality of life. In the end, they, alongside prominent scientists, vote on how the CDMRP would distribute funds for cancer research. In 2019, Congress appropriated $90 million for the program.
“Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process, the patient’s perspective, which is real and urgent,” said Colonel Stephen J. Dalal, the director of the program. “The collaboration of consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research programs.”
This was Johnson’s second time being a reviewer; she also served as a reviewer in 2018. In both years she was nominated by the National Coalition for Cancer Survivor to serve as a voting member. Johnson credits her long history of advocacy as well as her experience in CRI, an entrepreneurship program at the U.S. Department of Energy’s (DOE) Argonne National Laboratory, in helping her to prepare.
“The best part of me working with CRI is understanding what research terms like cohort and PI mean,” Johnson said. “When I heard those kinds of words come up during the review, right away I understood what those roles were and what they meant to researchers, which was helpful.”
Outside of her role in CRI, Johnson is an active member of non-profit organizations like the Fight Colorectal Cancer’s Research Advocacy Training and Support, where she advocates for more research, earlier detection, and measures to improve patients’ quality of life over their “quantity” of life. To her, bringing researchers and consumers like her together in the fight offers tremendous value.
“We can help researchers understand patients’ experiences first-hand and really put a face and a name to their work,” Johnson said. “I think that motivates them to work even harder, because they can see that whatever they’re doing for their research has real meaning and impact on people.”