Patient + scientist: In cancer research, a force to be reckoned with

Think about cancer advocacy groups, and lobbyists or fund-raising events – usually both – immediately come to mind. Less highlighted, however, is the fact that a subset of these advocates have a place at the table where panels of reviewers regularly sift through numerous grant proposals, helping the National Institutes of Health, the Department of Defense and others pinpoint funding-worthy ideas in cancer research.

Given the increasing scarcity of dollars for scientific investigations, Dan Dixon, Ph.D., co-leader of the Cancer Prevention Program at The University of Kansas Cancer Center, is determined to make the whole grant reviewing process truly count: by helping to educate its lay members. "I'd like to know that everyone – not just my peers in science – who reads one of my proposals is at least somewhat familiar with the subject," he explains.

Dr. Dixon volunteers with Fight Colorectal Cancer – nationally, the leading advocacy group for this particular disease – in what he describes as a "scientific training advisor" capacity. Specifically, he teaches members of its Research Advocacy and Training Support (RATS) program, mostly cancer survivors who in turn represent Fight Colorectal Cancer on grant review panels, about the basics of cancer biology.

"I'm helping myself as much, teaching them," he says. "These people will be rating my grant applications alongside my peer reviewers. If I don't learn how to explain things clearly so both groups are enthusiastic and engaged, it's much less likely that I'll get funded."

"As an advocate, you need to do three things: represent the patient community, not just yourself; understand enough science to follow the research process; and be willing to speak up in a room full of people who went to school for 20 years to get where they are, but you're there because you got sick," says Nancy Roach, chair of Fight Colorectal Cancer. "That last part can be very intimidating, and it's why RATS exists – to train our people so they understand their unique role on a review panel."

So far, Dr. Dixon has conducted a couple of basic science tutorials – via webinars – for the 15 RATS members. Roach fondly recalls him feeling a bit nervous prior to the first session in November 2012. To put him at ease, she took the lead asking questions. "I wanted to know things like how this gene gets mutated, or what this signaling pathway does," Roach says. "In answering my queries, Dan quickly relaxed. At one point, he talked about a specific mutation taking the brakes off of cell division and an attendee piped up, 'How does that work?' I wanted to cheer because somebody else had just asked a question, meaning they felt comfortable enough to do so."

Earlier this year, Dr. Dixon also attended Fight Colorectal Cancer's annual Call-on Congress in Washington, D.C. – a two-day intensive training course in advocacy, followed by a round of visits to various elected officials on Capitol Hill. Among other training activities, he walked the participants through an actual research proposal, helping them dissect a slew of scientific jargon into comprehensible bits.

"We were in a room with white boards along the walls," Roach says. "Dan stood up and began drawing pictures of cells, bringing science to life for us. Our group was thrilled to be talking with a real live scientist – cancer researchers like him are practically rock stars to lay advocates. We were also tremendously energized to do our part on the Hill the next day after hearing, in person, what funding cuts would mean to research."

It's a mutual admiration society. "These folks are passionate and amazingly positive," Dr. Dixon says of Roach and her fellow advocates. "They work really hard for all the right reasons, so it's easy to want to give something back. I hope I'm fostering a more critical eye when they look through stacks of grant applications. Science isn't anecdotal or emotional; I'm trying to guide them beyond personal stories or media sensationalism to think about the elements of effective research."

Dr. Dixon's efforts to get lay people over science's "hump of intimidation," as he puts it, appear to be paying off: this fall, Roach and RATS member Chris Adams, a statistician and stage 2 colorectal cancer survivor, will lead the rest of the group in a 14-week online course – "Introduction to Biology – The Secret of Life" – hosted by the Massachusetts Institute of Technology. They'll face weekly homework assignments and wrap up with a comprehensive final exam. The only requirement, as stipulated on the course's website, is a desire to learn. Roach anticipates that Dr. Dixon's teaching skills will once again prove a handy accompaniment.

And if the funding stars align, a RATS boot camp at KU Cancer Center is something Dr. Dixon would like to see happen. "A lot of these people have never seen the inside of a lab," he observes. "Once again, it's all about shedding light on things my colleagues and I take for granted – how cells are cultured in a dish; how an experiment is done."

"I wish universities, specifically, understood just how much difference getting regular folks involved with research can make," Roach adds. "It's joint lobbying power once each side – the advocate and the scientist – has seen just what the other is about."