Advocates in Research Working Group: Recommendations

摘要

The cancer research enterprise is vast and complex, with many individuals and organizations involved in myriad ways. Patients, and the advocates who represent them, are among the largest group of stakeholders in cancer research. For many who become advocates, a personal experience with cancer triggers a strong desire to become intimately involved in the research process as a way to give back and make a difference. Through research advocacy, advocates partner with researchers to bring a distinct, diverse, and critical perspective to the scientific process. Highly effective engagements between researchers and advocates currently result from the commitment of individuals who understand the potential value that an informed advocate can bring to the research process. These individuals are willing to invest the time and energy necessary to actualize that vision--they are the innovators paving the way. But, in the absence of evidence or a system that defines, informs, and supports those who want to contribute, these individuals will continue to be the outliers rather than the standard.