This month we are featuring CARRA member participation in the National Cancer Institute cancer Biomedical Informatics Grid (caBIGTM) project.

The NCI Center for Bioinformatics (NCICB) submitted a CARRA request for CARRA member participation in planning the February 2004 caBIGTM Kickoff Meeting in Washington, D.C., to help ensure that caBIGTM would engage advocate and public audiences starting with its official launch. CARRA member and overall advocate involvement in caBIGTM has grown steadily since then, with outstanding support from the leadership of caBIGTM in developing advocate roles for this critical and often technical research initiative.

  • caBIGTM functions through a structure of workspaces - collaborative groups including a wide range of participants - who focus on large topic areas. Each of the workspaces includes the participation of a qualified, selected consumer advocate, who actively participates in the teleconferences, meetings, and other activities of their workspace.
  • Together, these advocate representatives to the workspaces have developed a Statement of Expectations, Purpose and Goals. Their fundamental role is expressed in this statement: "The purpose of caBIGTM patient advocates is to help ensure that the caBIGTM end product, The Grid, will ultimately benefit the cancer patient by improving patient care and outcomes in the most effective and timely way possible."
  • The advocate representatives to the workspaces have developed a poster, illustrating the projected relationships between caBIGTM and each step of a patient's journey from diagnosis through treatment. The caBIGTM Patient Poster has already been displayed at the caBIGTM annual meeting; will be shown at the cancer advocacy community summit meeting "Listening and Learning Together: Building a Bridge of Trust"; and will continue to be available on the caBIGTM web site and for other events. The poster is an important illustration of how the development of caBIGTM will impact both the patient experience and cancer research.
  • The NCI Office of Advocacy Relations (OAR), NCI Center for Bioinformatics (NCICB), and the caBIGTM patient advocates collaborated on a conference call for OAR's "Understanding NCI: A Toll-Free Teleconference Series", discussing "Why caBIGTM is Important to Advocates".