With steady declines in patient enrollment for human clinical trials, UPMC and the Women’s Cancer Research Center are boosting promotion of a network founded in November 2013 to encourage participation in scientific studies.
Such participation is necessary to test new cancer treatments, but too few people are volunteering for trials, especially breast cancer trials.
“Lack of knowledge, paired with fear” may be the reason for low clinical trial recruitment, the Breast Cancer Research Advocate Network states in its literature. “Through patient and clinician education regarding breast cancer research, the goal is to increase interest in clinical trials, and ultimately accrual.”
While the network doesn’t recruit participants for specific trials, it does encourage involvement through explanation of potential health benefits for participants and future patients. The big selling point is receiving potential breakthrough drugs and treatments years before the average patient might receive them once they are proven successful.
“We want to demystify clinical trials,” said Dr. Carola Neumann, network co-leader and UPMC breast cancer researcher. “When surveys are done, it’s often the feeling that the person doesn’t want to be a guinea pig or lose current treatment. But treatment is not withheld, and usually you receive the standard treatment and a new clinical drug. Those two things need to be cleared up. So often, people believe in factors that are untrue.”
Karen DiVito, a breast cancer survivor involved with the network, said a veteran survivor who participated in clinical trials can help patients understand what questions the trial hopes to answer while advocating the need for researchers “to be sensitive to what the patient can commit to.”
A recent Post-Gazette article detailed how only 3 to 5 percent of cancer patients nationwide participate in such trials with a rate of 6 to 8 percent in Pittsburgh. The University of Pittsburgh Cancer Institute, which helped found the network, said its participation rate is about 13 percent of cancer patients.
The long, costly process helps determine whether a new drug, treatment procedure or combination thereof will improve patient health, quality of life and longevity. Low participation levels make it difficult for researchers to fill enough roster spots to assure their will to be scientifically important.
The network has been holding boot camps, where clinicians and breast cancer survivors help educate breast cancer patients about trials, with a push to publicize what clinical trials are scheduled. While researchers can educate survivors about the science of new drugs, cancer survivors can educate researchers about making trials more pleasant and patient friendly while stressing the need for more immediate treatments.
Ruth A. Modzelewski, mission coordinator with the Susan G. Komen Foundation in Pittsburgh, said one problem is lack of understanding in the general public about clinical trials, including their different phases to test safety then efficacy. “I think people don’t understand the numbers of patients required to get good data in a clinical trial,” she said.
Last year, the network received a Susan G. Komen Pittsburgh community grant to expand the program and help encourage participation.
“We all feel that education is the big thing,” Dr. Neumann said. “We also realize it is not an easy task, and we need workers, volunteers and money, which points to the importance of the Komen community grant.”
David Tempeton: firstname.lastname@example.org or 412-263-1578.
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