Program aims to boost clinical trial awareness
Vanderbilt Cancer Center social worker Toniya Villalobos uses a light touch to explain the center's clinical trials program to patient Frank Outhier III. (Photo by Donna Marie Jones).
Cancer treatment studies can often represent the best hope for patients, but only about 3 percent of people with cancer participate in these trials.
Seeking to raise this number, the National Cancer Institute has launched a program to better inform patients, their families and the community at large about the importance of cancer treatment studies, which are also known as clinical trials, and how they work.
Earlier this summer, Toniya Villalobos, a Vanderbilt Cancer Center social worker, participated along with 21 other social workers from across the country in the first training session of the NCI's campaign.
"The NCI recognizes that, with only 3 percent of cancer patients in cancer treatment studies, the message is not getting out," Villalobos said.
"The NCI is concerned about informed consent and how much time and energy people are spending on it. We need to get out the message that this is a voluntary process, that every drug we test has gone through this process, and that participants aren't guinea pigs, they are contributing to the body of knowledge that is vital to advances in cancer treatment."
Clinical trials are an important step in the development of new drugs and treatments. The first studies of new drugs, called phase 1 studies, are offered to patients who have exhausted other known treatments or for whom no effective treatment is known.
Later studies are randomized, meaning that patients are not guaranteed that they will receive the treatment being studied. However, participants receive either the best known standard therapy or the study drug, which earlier investigation has suggested is as good as, or better than, the standard therapy.
Similar training will be provided to staff of the NCI's Cancer Information Service later this summer and to participants at this fall's Oncology Nursing Society meeting, Villalobos said.
Participants in these training sessions are charged with taking the information back to their own cancer centers to develop educational programs that work best in their own communities, she said.
But equally important, Villalobos said, is that the NCI training staff was very receptive to the feedback they received from the social workers about the potential barriers to participation in clinical trials and how to overcome them.
"The NCI wants to learn from people on the front lines," she said. "For example, the social workers helped the NCI staff understand that you had to back up a step and know where an individual is in the process of facing their diagnosis before you can begin to talk to them about clinical trials.
Villalobos said she was impressed with the NCI's commitment to reaching a diverse audience from all ethnic, cultural, social and economic groups.
"That's not only the right thing to do from an ethical standpoint, it's the right thing to do from a scientific standpoint because if a diverse population isn't participating in trials, the data's skewed," she said.
Villalobos said she was also impressed with the NCI commitment to educating the general public about cancer treatment studies.
"There are a lot of barriers to participation. We need to proactively – but not coercively – get people to the studies that are appropriate for them. Whatever it takes, we need to be on the front lines offering."