On Sept. 10, 2001, the National Cancer Institute (NCI) launched the Consumer Advocates in Research and Related Activities (CARRA) program – a landmark initiative convened a large network of dedicated advocates who bring the viewpoint of those affected by cancer to NCI.

NCI staff, including researchers and scientists, were able to rely on the CARRA network of more than 200 advocates to give insight and feedback from the consumer’s perspective to their developing programs.

Although few advocates are involved in the day-to-day work of conducting cancer research, many are involved in activities that influence the direction of that work, such as (i) allocating research funding, (ii) participating on research teams, (iii) planning and implementing clinical trials, (iv) translating and disseminating research, and (v) research policy and oversight. Although there is significant overlap among these activities and the skills needed to effectively participate in them, many individuals begin their research advocate journey through review of research grant applications.

The trend of increasing collaboration between researchers and advocates has been significantly influenced by the early successes of these partnerships.

Despite our overall enthusiasm for including advocates in cancer research, we recognize that doing so can be challenging. Frank discussion of both the benefits and costs of actively including research advocates in the research process is meant to encourage self-reflection and to bring more attention to this important field of practice. We believe that open dialogue can only strengthen the role and potential of engaging advocates in the research process. All involved should identify, adopt, and disseminate promising practices when possible. By regularly assessing advocacy engagements, we will be able to systematically improve the discipline.