About CARRA
What Is the CARRA Program?
The National Cancer Institute (NCI) created
the Consumer Advocates in Research and Related Activities (CARRA) program to
draw upon the experience of people affected by cancer to represent the views of
cancer survivors and family members in NCI's daily activities. Our goal is to
recruit consumer advocates to form a "ready and waiting" group of
people who are available to participate in a wide range of NCI activities. Most
often members participate in the peer review process to help evaluate cancer
research grants and review cancer education materials. CARRA members represent
many different cancer types, age groups, and ethnic groups from across the
Nation.
CARRA Fact Sheet
What are the goals of the
CARRA program?
Two CARRA program goals were established in order to provide a clear focus for
program development and to ensure accountability for program outcomes:
1. Increase opportunities for CARRA members to
provide input in NCI's research activities involving scientific research and
communication of scientific research.
2. Help
foster an organizational atmosphere that values the contributions of consumer
advocates, through the involvement of CARRA members in NCI activities.
Who can apply to become a member of the CARRA program?
Individuals who are cancer survivors, or are family members or partners of
cancer survivors, or have more than 3 years of involvement in cancer-related
activities and:
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Can represent the viewpoint of other cancer survivors or their family members
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Can make a 3-year commitment to participate in one or more activities from home
and/or in the Washington, DC, area
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Want to learn more about cancer and cancer issues
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Have a high school degree and are fluent in English
How was the CARRA program
developed?
The CARRA program was created with the input of the consumer advocacy community
and key NCI staff members. A needs assessment in the form of in-depth
interviews with consumer advocates and NCI staff members was conducted.
Following these interviews, the Consumer Advocates in Research (CAR) workshop
was convened in September 2000. The meeting produced a best practices document,
which serve as guiding principles in the development of the CARRA program.
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:
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Involve consumer advocates and NCI staff in developing and refining NCI's
procedures for involving consumer advocates
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Foster an understanding of and value for consumer advocates' perspectives and
contributions
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Routinely evaluate, and as necessary modify, CARRA activities and procedures
CARRA program procedures must:
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Reflect NCI's stature as a national-level agency that is accountable to the
public
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Reflect the needs of NCI staff, scientists, clinicians and consumer advocates
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Be fair, open and impartial
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Ensure diversity among the consumer advocates working with the NCI
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Ensure that the roles of all participants and the purpose of activities
involving consumer advocates are clearly defined
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Ensure that all participants are educated about their own and each other's roles
How does the CARRA program work?
The NCI recruits a group of people as CARRA program members who can provide
input to the Institute. Based on a combination of their skills and interests,
as well as NCI program needs, CARRA members are selected for individual NCI
activities. They are recruited in advance to allow participation in activities
on an as-needed basis.
What activities are CARRA members asked to participate in?
Activities involve both science and communications. Examples include:
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Developing and reviewing cancer education pamphlets, videos, or Web sites
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Participating in meetings to provide opinions about NCI research plans and
policies
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Evaluating patient-oriented research at cancer research centers
Current Activities
How many members are in the CARRA program?
The NCI selected approximately 220 members from the applications received in
April 2001. Each member will be called upon at least three times during his or
her term to participate in activities either at home, in the Washington DC
area, or other locations throughout the U.S. In addition to these activities,
the NCI expects to communicate regularly with program members to seek their
communities' viewpoints on issues important to the Institute.
How long is a CARRA program member's term?
Currently, CARRA members have a 3 year term. The upcoming CARRA term will be from September 2004 through August 2007.
Is orientation or training provided by the NCI?
A general orientation about the NCI and the roles and responsibilities of CARRA
members is provided. Some of the orientation is available online at
http://la.cancer.gov/CARRA. Additional training and tools will be
tailored for each activity. Mentors (advocates with experience in the
Institute's programs) will also be provided for new CARRA program members.
How are members compensated for their work?
Members are paid for approved travel and expenses for all activities.
How are applications to the CARRA program evaluated?
Applications are reviewed for completeness and then evaluated by three reviewers
made up of two NCI staff members and one cancer advocate who is presently a
member of the NCI
Director's Consumer Liaison Group (DCLG). Reviewers rate the
applications on specific review criteria and assign an overall impression
score. Scores from each reviewer are averaged to generate a rank-ordered list.
Final selections are made from this list of applicants to ensure diversity
among members and balance across cancer types.
How do I apply to the CARRA program?
The application period for the October 2004 - September 2007 term is now closed.
Please see the announcements section for more
details.
How can I get more information about the CARRA program?
The Office of Liason Activities is responsible for administering the CARRA
program. For further information please contact the Office of Liason Activities
at:
Phone: 301-594-3194
E-mail: ncicarra@mail.nih.gov
Internet: http://la.cancer.gov
The National Cancer Institute values and fosters diversity throughout the entire
organization.
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