Pete Shaw, M.D.
Here at the V Foundation for Cancer Research, we get the unmatched opportunity to speak with ground-breaking award recipients in all areas of cancer research. We’re fortunate enough to delve deep into their areas of focus and research to hear about their successes, but also about existing barriers to cures in their research. Over the years, we’ve noticed a unanimous point of agreement: One existing obstacle to finding a cure to cancer is the lack of patient enrollment in clinical trials. Research has shown children who enroll in clinical trials may have better survival than those who do not, and yet only approximately 40% of children enroll in treatment studies.
Historically, African-Americans and Hispanic patients enroll at lower rates than Caucasian patients. One reason behind families’ hesitation to enroll their children in clinical trials is the lack of proper education by the medical team as to what the studies entail. Peter Shaw, M.D., of the Johns Hopkins All Children’s Cancer & Blood Disorders Institute, took it upon himself to find ways to further educate patients on clinical trials to lower their angst about participating in them. Shaw’s project creates bilingual educational materials to teach families and patients about research protocols and their purpose.
Shaw closely analyzed different descriptions of clinical trials, websites and books to match the language type. The goal is to aim for 8th grade reading language. He composed pamphlets at an 8th grade reading level and shared them with colleagues to ensure accuracy and appropriate reading level. The next step was professional translation. Although he trusts his own Spanish as well as that of his bilingual colleagues, “There are official translation services that are much more meticulous than any physician could be,” he said. Shaw recognizes the subtleties to language that can get missed by non-professional translation. “The intentions can be good, but if you don’t execute it well – if there’s one wrong word that has a scarier connotation for a native Spanish speaker – then you’ve shot yourself in the foot,” he said.
According to Shaw, people have been very receptive to getting the new information, and it ultimately leads to better questions and answers going back and forth between the doctors and patients. When looking at his specific group of researchers in the June 2017 to June 2018 calendar year, Shaw saw a 17% increase in total clinical trial enrollments for pediatric patients in comparison to the year prior to clinical trial materials being distributed. Over the 12-month period, the total clinical trial enrollments went from 20.4 per month to 21.9 per month. Shaw acknowledges there are many variables that contribute to clinical trial enrollment rates, so it would be misguided to say this is a definite cause and effect, but it is encouraging. Other things that come into play are the number of clinical trials available to pediatric patients and if they coincide with the patients’ illnesses.
According to Shaw, for the most part, if a doctor has experience presenting the clinical trial, and is able to properly explain the trial, most families will be willing to participate – if not for the benefit of their own child, but for the future benefit of other children from new knowledge gained from the research. “Many families are very altruistic,” he said. With several factors, including clinical trial availability, and family dynamic making it difficult for anyone one to get 100% clinical trial enrollment, Shaw would like to think bilingual materials have been a contributing factor to the increase in enrollment for the studies he oversees.