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Authors: Breast and Gynecologic Research Advocate Committee members
From time to time, Huntsman Cancer Institute invites guest commentary from our community. The views reflected in these commentaries are those of the author and do not necessarily represent the official views of Huntsman Cancer Institute.
Cancer changes lives. Many survivors are driven to give back to those who face their own cancer journey. This drive is what brings a group of patients and survivors together one Friday a month to collaborate with researchers, sharing their valuable perspectives.
Breast & Gynecologic Research Advocate (BGCRA) Committee members are patients and survivors who have confronted breast, ovarian, endometrial, and/or cervical cancers. These 14 volunteers are research advocates who share their experiences to help shape future projects. Advocates are supported by their scientific advisor and two liaisons who are post-doctoral fellows.
BGCRA members serve as research-specific advocates and support the (BGCC) at Huntsman Cancer Institute. When needed and requested, these advocates provide patient perspectives to ensure that their viewpoints and lived experiences carry over to the design and execution of future research projects. Advocates collaborate with BGCC researchers as they pursue grants, pilot studies, clinical trials, awards, and other research endeavors. Advocates also initiate and conduct their own research studies to support BGCC and Huntsman Cancer Institute and assist in fundraising and community outreach efforts for BGCC researchers and BGCRA members. Through these efforts, BGCRA members are dedicated to positively advancing care, treatment, and outcomes.
Seven years ago, , and Carla Lloyd, PhD, put their heads together to figure out how to bring research advocacy to breast and gynecology researchers. Out of that came the BGCRA Committee, which boasts a 95% success rate in landing grants for researchers where they have contributed a letter of support. The BGCRA Committee organizes an annual advocate/trainee symposium each year called Project Next and is the only research advocate group currently supporting one of the 13 cancer centers.
Researchers see real value working with the committee. Speaking about the group, , says, 鈥淵our advocacy and support have not only benefited our research and research across Huntsman Cancer Institute, but also helped raise awareness about these devastating diseases and the urgent need for continued research and development.鈥
鈥淓very time I attend a BGCRA Committee meeting I learn something new about cancer,鈥 says Linda James, an advocate. These give-and-take sessions are beneficial to both sides, with advocates feeling that their voice is heard and researchers appreciating the valuable insight.
For advocates, there is also a sense of empowerment and hope as they are exposed to exciting new research at Huntsman Cancer Institute that will benefit future cancer patients. The common interest both advocates and researchers share for finding answers to the unknowns creates a powerful synergy.
Hope is powerful. It inspires us to do the impossible and helps us move forward when things feel difficult. Advocate Sara Orgill, summed up her experience saying:
鈥淭his committee gives advocates a voice to share hope.鈥