The CARRA program was conceptualized and developed through combined efforts of individuals and teams of people, both from National Cancer Institute (NCI) staff and from advocacy groups. The Guiding Principles of the program, used in the development, are also included below.

1996 - 2000
The NCI Office of Liaison Activities (OLA) receives, on average, about 25 requests per year from NCI staff to assist them in involving consumers in their activities.

Fall, 1998

Fall, 2000

  • Consumer Advocates in Research (CAR) Workshop - DCLG, advocacy community leadership, and NCI leadership attend
  • Guiding principles developed
  • Program logistics determined

Spring, 2001

  • Over 500 applications to the CARRA program received
  • DCLG instrumental in determining the selection criteria and balancing factors
  • Racial and ethnic diversity
  • Gender diversity
  • Disease site diversity (based on incidence ratios)
  • Orientation packages and teleconferences were organized

Fall, 2001

  • NCI successfully implements the first systematic program to involve the consumer advocate voice into its daily activities
  • Over 200 CARRA members were accepted into the program
  • Approximately 150 new voices are included, and about 70 members are grandfathered into the program on the advice of NCI staff.
  • A CARRA member announce-only listserv is set up for convenient communication with all members

What are the guiding principles of the CARRA program?

These principles reflect NCI's commitment to the inclusion of consumer advocates and the value it places on their unique perspectives.

Guiding Principles

The CARRA program should:

  • Involve consumer advocates and NCI staff in developing and refining NCI's procedures for involving consumer advocates
  • Foster an understanding of and value for consumer advocates' perspectives and contributions
  • Routinely evaluate, and as necessary modify, CARRA activities and procedures

CARRA program procedures must:

  • Reflect NCI's stature as a national-level agency that is accountable to the public
  • Reflect the needs of NCI staff, scientists, clinicians and consumer advocates
  • Be fair, open and impartial
  • Ensure diversity among the consumer advocates working with the NCI
  • Ensure that the roles of all participants and the purpose of activities involving consumer advocates are clearly defined
  • Ensure that all participants are educated about their own and each other's roles