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Why Patient Engagement is Critical to Breast Cancer Research

By BCRF | April 3, 2019

At the AACR Annual Meeting, BCRF researchers share how research benefits greatly from patient participation and feedback

Researchers and patients share a common goal: to accelerate breakthroughs to save lives. Clinical trials are where these two groups can work together towards this collective objective. At the AACR Annual Meeting held March 29 through April 3 in Atlanta, BCRF researchers discussed how scientists can better engage patients throughout their projects. The conference, attended by thousands of scientists from around the world, covers the latest discoveries across the spectrum of cancer research.

BCRF investigators Dr. Elizabeth Jaffee and Dr. Nikhil Wagle participated in a panel titled Engaging Cancer Patients as Partners in Research with Drs. Gregory Simon, Paul Kluetz and Louis Staudt alongside patient advocates Danielle Leach and Vernal Branch. They discussed the importance of including cancer patients’ data and input in the research process.

Patient engagement is the “blockbuster drug of the twenty-first century,” Dr. Elizabeth Jaffee said pointing to how it can reduce disparities and inform survivorship science.

Involving patients from the start

However, while researchers see the value in empowering patients throughout the research process, there are major challenges that lie ahead. Currently, less than three percent of cancer patients participate in clinical trials.

In order to increase accrual, researchers agree putting the patient at the center of clinical trial design can lead to trials that will both engage patients and benefit them the most. This can be seen in not only improving a patient’s longevity but also giving them the opportunity to live the best life while living longer. This is where patients can truly impact the research process.

Breaking down barriers

Even if trials are well designed, not all patients may be able to participate, because of eligibility criteria or distance from the clinical trial site, Dr. Nikhil Wagle pointed out. That’s why he founded Count Me In, a nonprofit designed for patients in the U.S. and Canada to share their information with the research community.

Supported in part by BCRF, Count Me In was created to encourage patients to share their data in an easy and accessible way. The initiative curates data from surveys, medical records, genetics, and more into a database that is deidentified and made available to the broader research community. Dr. Wagle now has over 6,000 patients across the U.S. and Canada enrolled.

During the question and answer portion of the panel, a current patient stated how important it was for her to participate. It gave her a sense of accomplishment and that she could make an impact in cancer research.

By involving patients in the research process, investigators hope to help create a more integrated cancer care and research system that can impact patients from diagnosis through treatment, remission and even prevention. BCRF is proud to support this collaborative effort that will lead us one step closer to the end of breast cancer.