Cancer Research Advocates Committee

Purpose 

The Cancer Research Advocates Committee (CRAC) is a standing committee that brings the patient perspective and experience to the cancer clinical trials being designed and conducted at the ECOG-ACRIN Cancer Research Group (ECOG-ACRIN). CRAC members—all cancer survivors and caregivers, offer unique patient experiences and connections to their individual networks of cancer support organizations, patients, and other advocates for bi-directional communication.

Goals/Specific Aims 

ECOG-ACRIN research advocates are active members of committees across the Scientific Programs, participating in regular meetings and conference calls. They are a resource in multiple ways, advising research teams as they discuss promising new scientific ideas and plan new clinical trials. There are four essential time points when research advocates represent the needs and concerns of patients:

1. Design stage – Research advocates explain the practical aspects of being in a clinical trial and what might be attractive or a barrier for potential participants.
2. Protocol and informed consent document review – Research advocates review the informed consent document, focusing on whether it is understandable to a lay audience, using the protocol document as a reference.
3. Trial activation – Research advocates review the patient education materials for whether they are understandable to patients (in simple language and free from acronyms or technical medical terms). They also assess recruitment and social media plans for their reach into the patient community.
4. Results reporting – Research advocates ensure that advocacy organizations and patients learn about clinical trial results that lead to improvements or changes in cancer treatment. They ensure that published results of clinical trials are summarized in language that is understandable to a lay audience. These are currently available in ECOG-ACRIN’s quarterly Advocacy Blog.