Translational Breast Cancer Research Consortium (TBCRC) Patient Advocate Working Group (PAWG): An approach to research advocacy.

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e19539 Background: Cancer research patient advocates act as a connection between the patient population and the research community, bringing the patient perspective to the research table and the research agenda to the patient community. Advocates may impact the direction and expression of the science in its application to patients. The TBCRC is a collaborative group of 16 academic research centers with the goal of conducting innovative, high-impact breast cancer clinical trials. TBCRC trialists test novel strategies and work to understand the underlying cause and biology of breast cancer. Methods: TBCRC centers nominate a patient advocate to the Patient Advocate Working Group (PAWG). PAWG was formed in 2008 and is structured like all other TBCRC working groups with two co-chairs and institutional representatives. PAWG meets monthly by phone and yearly in person. PAWG members participate in TBCRC clinical and research working groups, collaborating with researchers to evaluate patient friendliness and acceptability of proposed trials and accrual issues as well as to educate patients. PAWG initiates and develops its own projects to support and enhance TBCRC’s mission. Results: Examples of activities of the PAWG include consulting to PIs on proposed trial designs and a recruitment tool kit for activated studies; tissue banking surveys to provide a foundation for “best practices” for the TBCRC members; reviewing forms to provide consistency and patient focus when reviewing concepts, protocols and informed consent documents; creating a brochure for patients and the public to publicize the work of the TBCRC; composing letters from the advocates to prospective trial participants explaining specific trials and offering support and compassion; and adding questions to a surgical trial to better understand the patient experience. Conclusions: The TBCRC PAWG is a viable, proactive part of the TBCRC that participates in advancing the science through dynamic interaction with and participation in other TBCRC working groups, support of trial initiatives and activation of its own projects. The TBCRC PAWG enhances the achievement of the goals and mission of the TBCRC.

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