Clinical trials are about more than just collecting data – they’re about survivorship and family. This was the focus of Rose Gerber’s talk at the CURE Patient-Focused meeting at the 36th Annual Miami Breast Cancer Conference.
“There are different stakeholders in clinical trials,” said Gerber, a breast cancer survivor herself and the director of Patient Advocacy and Education at the Community Oncology Alliance (COA). COA’s mission is to advocate for the preservation of cancer care – especially when it comes to community cancer practices.
“When we think about clinical trials, to me in my mind, it’s about survivorship and family.”
Gerber was involved in a clinical trial, testing the efficacy of trastuzumab (Herceptin). She said that her oncologist referred her to the trial, but everyone on the treatment team plays a role – including the scientists conducting the trials, doctors, oncology nurses, and patients – in not only discussing clinical trials, but also the important concept of informed consent where patients have a full understanding of the trial, willingly decide to participate, and continue their consent through the duration of the trial.
“We all need to work together,” Gerber said. “It should be patient-centered, but it takes all of us.”
While Gerber was referred to a clinical trial by her care team, there are also other resources that oncology nurses can discuss with their patients, including websites for major cancer centers, and other resources such as the Susan G. Komen Foundation, breastcancer.org, and the American Society for Clinical Oncology’s (ASCO) website.
Clincaltrials.gov hosts information for all cancer clinical trials in the United States. And while Gerber mentioned that some have said that the website is not patient-friendly, it is uplifting to see the amount of research that is being conducted.
“Despite all the criticism, around this site, it’s pretty phenomenal. There are over 4500 studies on breast cancer. That’s fantastic for all of us,” she said.
But despite all these resources, there are also barriers that patients face when it comes to enrolling in clinical trials. They range from personal perceptions – including lack of awareness, distrust, and financial concerns – to logistical problems, such as the need for childcare for additional appointments and transportation issues.
“My big issue was that I needed to get home for the 11 a.m. school bus,” Gerber, who had 2 young children when she was diagnosed with early-onset breast cancer, said.
Another common assumption is that patients can only enroll in a clinical trial if they are being treated at an academic institution. But Gerber stressed that this is not the case.
“Great trials are already happening in the community setting,” she said.
Gerber hopes that by increasing engagement in clinical trials and engaging community leaders as clinical trial ambassadors, more patients can overcome these barriers. From both a professional and personal standpoint, adding that she has a goal of educating people about clinical trials.
“I believe let’s walk the talk,” she said. “One of the ways that we can overcome barriers is to have somebody patients can trust – another patient like them who enrolled and can talk about the experience.”