In the past couple of decades, progress against cancer has created a new generation of survivors. Today, more than 16.9 million people in the United States are cancer survivors. While their experiences are incredibly diverse, many are living well. They work, they tend to their families, they travel … and many are inspired to play a role in the cancer research community.
The Presidential Select Symposium at the AACR Annual Meeting 2019 addressed these crucial roles in a session titled “Engaging Cancer Patients as Partners in the Research Process.” The session was moderated by outgoing AACR President Elizabeth M. Jaffee, MD, deputy director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.
“We are witnessing a culture shift in how patients participate in cancer research,” Jaffee said. “This process is driven by patients, survivors, and their families, and it’s becoming an integral part of cancer research. Ultimately, patients can help us reduce disparities, disseminate research back to their own communities, assess emerging technology, and really inform survivorship science.”
Jaffee introduced a roster of panelists representing several different aspects of cancer research and survivorship. First up was Gregory Simon, JD, president of the Biden Cancer Initiative, a powerful voice for patients since it was launched in June 2017.
“Cancer is completely focused on you as a patient; it’s not distracted by anything. It uses every resource the patient has to grow the disease,” he said. “We have to be as smart as cancer, and right now, we’re not.”
Simon said that while researchers focus on developing new drugs and improving responses to existing drugs, they should involve patients to the greatest possible extent.
“We need their opinions on quality of life, side effects, and how much they are willing to tolerate,” he said. “Even as patients are dying, many still want to help. We have to honor that.”
In 2017, the U.S. Food and Drug Administration (FDA) formally established the FDA Oncology Center of Excellence to help expedite the development of cancer drugs and related biologics and devices. Paul Kluetz, MD, is the acting associate director of patient outcomes at the center. He told the audience that part of the center’s mission is to ensure that clinical trials have robust, diverse enrollment, with increased access for underserved patients. He said he hopes to see more decentralization of trials, so that patients who live far away from major medical centers can participate, perhaps with the help of technology such as wearable devices.
One of Kluetz’s counterparts at the National Institutes of Health, Louis Staudt, MD, PhD, noted that large-scale genomics programs should prove useful in gaining more information on a diverse range of patients. Staudt cited The Cancer Genome Atlas, a joint program of the National Cancer Institute and the National Human Genome Research Institute as well as the AACR’s Project GENIE and Count Me In, administered by the Emerson Collective, the Broad Institute, the Biden Cancer Initiative, and Dana-Farber Cancer Institute.
Nikhil Wagle, MD, director of Count Me In and an oncologist and researcher at the Broad Institute and Dana-Farber, described the project’s vision for more patient-centered research.
“Count Me In is aimed at making it possible for patients anywhere in the country to share their medical information and tumor samples with researchers,” he said. Count Me In is currently running four projects, in metastatic breast cancer, angiosarcoma, metastatic prostate cancer, and gastroesophageal cancer. Patients’ deidentified genomic data is shared with researchers every six months, providing a valuable resource for researchers studying these cancer types.
Wagle showed photographs and letters from patients around the country, including many rural residents who once thought they wouldn’t be able to participate in clinical trials or large studies.
“It’s rewarding to hear from patients who feel that their cancer experience is now being taken into consideration,” he said.
Finally, a pair of patient advocates shared their own stories. Vernal Branch, who survived a bout of breast cancer 25 years ago, has become a tireless advocate for the Virginia Breast Cancer Foundation. She urged the researchers who shared the stage with her to keep patients involved through any and all stages of their care, even inviting them into the lab when appropriate.
“If they’re smart enough to understand their own health care, they’re smart enough to know what you’re doing in the lab,” she said.
Danielle Leach was spurred into advocacy by her young son’s death from medulloblastoma. Today, she is the senior director of Advocacy and Government Relations at St. Baldrick’s Foundation. She told her fellow panelists and the audience that while it may seem difficult to involve sick children or their parents in the research process, it is critically important to families facing a cancer diagnosis.
“Pediatric needs must be considered at the beginning of the research process, not just after adult needs are met,” she said.
The panelists shared a sense of hope and excitement about the potential of patients participating more fully in the research process. Their involvement can be complicated by medical needs, access, cost, and more, but all agreed that patient participation is worth fighting all potential barriers.
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