Role of the CARRA Member

Your primary role as a CARRA member is to bring the perspectives of those affected by cancer to the work of NCI. In some activities, you represent the perspective of your cancer community (such as lung cancer or kidney cancer). In other activities, you represent the perspective of patients, caregivers, and/or others affected by all cancers. CARRA members do not represent the viewpoints or issues of any advocacy organization or personal issues as individuals in any NCI activity.

When representing the perspective of those whose lives are affected by cancer, you enable Institute staff to see their research, communication, education, or other activity through the eyes of the target audience for their work.

Important policy note: As a CARRA member, you represent your cancer-related community, and in some cases cancer patients or caretakers broadly. You do not represent the National Cancer Institute, the CARRA program, or other CARRA members. The purpose of the CARRA program is to ensure that the advocate voice is brought to NCI activities. You were selected as a CARRA member to help represent people affected by cancer. You are not an employee or representative of NCI, nor can you imply that you speak for NCI, the CARRA program or other CARRA members.

Role Descriptions

There are three types of CARRA member roles:

  1. General Cancer Advocate:
    • Focuses on issues important to most/all cancer patients, survivors, and their families
    • Reflects the perspective of all cancer patients regardless of their type of cancer
  2. Cancer-specific Advocate:
    • Focuses on issues important to a specific type of cancer patients, survivors, and their families
    • Reflects the perspective of individuals with cancer of a particular site, such as
      • Breast
      • Colon
      • Prostate
  3. Mentor:
    • Provides guidance and support to less-experienced CARRA members
    • Note: This role is only available for experienced CARRA members.

Responsibilities of CARRA Members

General Responsibilities

Your general responsibilities include participating, communicating, and educating.

  • Participating

    You are responsible for

    • Participating in NCI activities actively and asking effective questions
    • Understanding your roles and responsibilities
    • Being open-minded, constructive, professional, and diplomatic
    • Going beyond your own personal or political agenda
    • Identifying conflicts of interest and promptly reporting them
    • Maintaining confidentiality before, during and after an activity

  • Communicating

    You are responsible for

    • Communicating regularly and in a timely fashion with your group to understand its needs and perspectives before participating in a NCI activity
    • Sharing information about NCI and its programs with your group
    • Expressing your ideas and views clearly and accurately to NCI, representing the perspective of those affected by cancer
    • Maintaining active two-way communication between your group and NCI
    • Asking questions to clarify activity goals and assumptions in lay terms

  • Educating

    You are responsible for

    • Educating NCI and other activity participants about the advocacy community and your cancer community in particular
    • Educating your advocacy community about NCI's programs and issues

Activity-Specific Responsibilities

The overviews of each type of activity describe the unique responsibilities of participating in

  • Science/Research activities, such as peer reviews
  • Communication of science activities, such as web site testing

Special Considerations for Each NCI Activity

You are responsible for considering the special issues below for each NCI activity.

Communicating With the Group You Represent

As a CARRA member, you provide an important link between NCI and your cancer-related constituency. In this linking capacity, you have two different communication responsibilities.

  1. Communicate with/for NCI - Periodically gather input from the cancer-related group you represent on issues facing NCI
  2. Communicate with your cancer-related group - Educate your group about NCI, including programs that are important to patients and their families

Keeping Your Contact Information Current

You are responsible for keeping NCI aware of your most current contact information. Submit any changes through the online CARRA member update web site: