Patient advocates and the promotion of social justice in cancer research at the National Cancer Institute

Since 2001, the National Cancer Institute (NCI) has systematically engaged patient advocates in NCI activities to enhance the research process and promote social justice by engaging its ultimate consumer - those affected by cancer. In 2007, the NCI Director asked his advocate advisory committee (the Director's Consumer Liaison Group, or DCLG) to form a working group to study advocate involvement at the Institute and make recommendations for strengthening consumer participation. The resulting Advocates in Research Working Group (ARWG) developed recommendations in six areas: (1) recruiting diverse and highly qualified research advocates; (2) developing a robust assessment and matching process to link advocate skill sets to NCI needs; (3) providing training, coaching and resources to advocates and NCI staff; (4) guiding the advocate/staff engagement process; (5) tracking and evaluating advocate participation to measure outcomes and promote continuous quality improvement; and (6) retaining advocates and staff engaged in successful collaboration. The NCI Office of Advocacy Relations (OAR) is working with research advocates and representatives from across the Institute to implement the recommendations and increase the value of advocate engagement in the research process. Using the ARWG recommendations and lessons learned from the research literature, the National Cancer Institute aims to accelerate the progress of cancer research, advance social justice, and ultimately reduce health disparities.