Aiming for the Moon in Cancer Trials

Working together with patient advocates can improve the experience and impact of cancer clinical trials

26.07.2016   |   14:30 AEST

World Cancer Day 2016 marks the launch of a three-year campaign dedicated to exploring how everyone can play a part in reducing the global burden of cancer. This “We can. I can.” campaign focuses on several messages, including “We can work together for increased impact.” Nowhere is this message truer than in the work being done in cancer clinical trials today.

Clinical trials have introduced new treatments that have improved the lives of millions. However, only 3 percent of cancer patients participate in clinical trials today, and dropout rates can be as high as 30 percent. To ensure that clinical trials remain as efficient, informative and effective as possible, patient advocates are becoming essential conduits to understanding and improving the patient experience.

“It’s important to have the patient voice and perspective throughout the process,” Joel Beetsch, vice president of patient advocacy at Celgene, said. “Over the past year, we’ve made a large effort to work with patient groups to find ways to improve the experience of clinical trials for patients and, as a result, make the process more effective.”

Over the past year, we’ve made a large effort to work with patient groups to find ways to improve the experience of clinical trials for patients and, as a result, make the process more effective.

Beetsch has been helping to identify best practices for engaging patient groups in trials through a public-private partnership called the Clinical Trials Transformation Initiative (CTTI). Recently, the CTTI recently published the results of a survey in the Public Library of Science One that found individuals from industry, academic institutions and patient groups view the barriers to and benefits of partnering with patient groups differently. After analyzing these perspectives, the CTTI has developed recommendations for a more holistic approach to engaging patient groups in clinical trials than traditional efforts.

“Historically, the industry has only looked to patient advocacy groups for help with trial recruitment,” Beetsch said, “But patient advocacy groups can provide a valuable perspective throughout the process.”

For instance, Beetsch helped spearhead a program in which patient advocacy groups reviewed Celgene’s informed consent forms, which explain the goals, potential benefits and possible risks of a trial to patients. The advocates pointed out that the forms didn’t explain how the study would fit into patients’ lives. When and where would the patient need to show up for appointments? How long would those appointments last? While it seems obvious in retrospect, explaining the nuts and bolts of committing to a trial upfront might reduce dropout rates.

Another major reason patients drop out of clinical trials is distress. Since 32 percent of cancer patients experience some form of emotional distress, this obstacle can be exceptionally challenging in cancer trials.

Cancer Moonshot 2020To help patients cope with the distress and stay in studies longer, the Cancer Support Community with support from Celgene’s Impact Innovation Award program is adapting its Cancer Support Source for use in clinical trials. The program will give clinical researchers a simple yet accurate 36-item distress-screening tool. Once distress is recognized, the system provides doctors and patients with resources and recommendations for addressing it.

These steps to improve the patient experience will be essential as we continue to explore the next-generation of combination immunotherapies through the Cancer Moonshot 2020 initiative—the ultimate in the “We can. I can.” attitude of working together to improve outcomes.

Under this initiative, an alliance of multiple stakeholders across the cancer care ecosystem has come together to enroll 20,000 cancer patients for clinical trials by 2020. Celgene is one of the companies supporting this initiative as it prepares to launch.

“We’re still in the very early stages of the Cancer Moonshot 2020, but Celgene is very much dedicated to working with patient advocates and other partners in this initiative,” said Beetsch. “We’re hoping it will really open the eyes of cancer patients to the patient-centric experience that today’s clinical trials offer.”