For NCI Staff

• What Is CARRA, and Who Are CARRA Members?

• What Value Do CARRA Members Add to My Activity?

• What Is the Process for Selecting CARRA Members for My Activity?

• How Should I Introduce CARRA Members to My Activity?

• How Can I Achieve a Successful Working Relationship With CARRA Members?

• Where Can I Get Help When Working With CARRA Members?

What Is CARRA, and Who Are CARRA Members?

Definition: CARRA

CARRA (Consumer Advocates in Research and Related Activities) is an easy, time saving service to NCI staff for involving consumer advocates. CARRA simplifies the process and offers a prescreened network of "ready and waiting" consumer advocates.

NCI established CARRA to

• Expand opportunities for consumer advocate involvement in NCI activities

• Make the process of involving consumer advocates easy
  

What CARRA Provides

CARRA provides

• A group of individuals to participate in your activities in order to represent the views of cancer survivors and family members

• Support to NCI staff and CARRA members

• Resources to address questions and to assist you and CARRA members
  Example: Mentors, Office of Liaison Activities staff

• Online orientation modules to provide background and training information for CARRA members, scientists, NCI staff, and other activity participants

In addition, the Office of Liaison Activities has developed a simple process for

• Matching CARRA members to your activity

• Generally orienting CARRA members to NCI and its activities

Definition: CARRA Member

CARRA members are consumer advocates who are one of the following:

• A cancer survivor or patient

• A first-degree family member or partner of a cancer survivor

• A person with at least 3 years of involvement in cancer-related activities

CARRA members represent diverse perspectives related to cancer type, ethnicity, rural location, geographic region, gender, and age.

CARRA Member's Role

CARRA members' primary role is to represent the perspective of those affected by cancer to NCI's work. The scope of their cancer perspective for your activity depends on the Role Preference they selected when they applied to the CARRA Program.

CARRA Members' General Responsibilities

To fulfill their primary role, CARRA members' General Responsibilities include

• Participating effectively in your NCI Activity

• Communicating with the group or constituencies you represent

• Educating NCI, their constituency, and other participants as, or with, a mentor

CARRA Members' Activity-Specific Roles

Different activities require CARRA members to provide their perspective about the cancer experience in different ways.

CARRA Members' Activity-Specific Responsibilities

In addition to their general responsibilities, CARRA members will have activity-specific responsibilities. These will differ based on the type of activity that involves CARRA members. CARRA members learn about their activity-specific responsibilities in the

• Overview of each Activity Specific Information

• The activity description from the Activity Profile

What Value Do CARRA Members Add to My Activity?

Strengthen and Enrich Research Programs

NCI includes consumer advocates because they strengthen and enrich our research programs by

• Incorporating the viewpoint of those affected by our work in cancer

• Disseminating information to the public about NCI and its research

• Assisting with clinical trial accrual

• Advocating for science and scientists

Bring Advocacy Information and Perspective

CARRA members have knowledge about what happens "beyond the bench." Just as scientific experts are essential for ensuring the full consideration of relevant scientific and technical issues, CARRA members are critical for ensuring full consideration of:

• The real life experiences of cancer patients and their families

• The impact of NCI's reasearch on cancer patients and their families

Represent People Affected by Cancer

CARRA members, through their connections to groups/constituencies and personal experience, speak for patients, survivors, and family members.

They are charged with representing these constituencies beyond their own personal experience.

Sharpen the Focus of the Discussion About Patients

CARRA members

• Literally put a human face on the Nation's cancer burden and the research

• Stimulate a straightforward presentation of ideas that often enhances scientific clarity

Provide Practical Knowledge of the Cancer Experience

As professional colleagues, CARRA members enlighten the scientific dialogue with a practical, legitimate perspective. They have experience about how the systems and processes under discussion affect patients and families.

Several issues CARRA members can help with include

• Clinical trial accrual

• Participation in cancer research

• Treatment experience

• Quality of care and quality of life

• Psychological impact of cancer

• Public perception of cancer research progress

Bring a Sense of Urgency to the Research Agenda

CARRA members serve as partners with NCI and bring a sense of urgency to NCI's research agendas.

You would not consider planning or implementing a scientific activity without the knowledge and buy-in of scientific experts. Similarly, you should not consider planning or implementing activities that will ultimately influence cancer patients and those affected by cancer without involving CARRA members.

What Is the Process for Selecting CARRA Members for My Activity?

CARRA Member Selection Process

As the lead NCI staff person for a specific activity involving CARRA members, you are the designated Activity Contact. Staff contacts are identified for each CARRA activity. The table below describes the process for selecting CARRA members for your activity.

Completing an Activity Profile

As an Activity Contact, you are responsible for completing an Activity Profile. The Activity Profile provides a simple tool for

• Identifying preliminary information about the purpose and requirements of your activity so that CARRA members can be matched to your specific activity

• Initiating discussions with Office of Liaison Activities staff

• Assisting you in planning for your activity

Complete an Activity Profile Form

Activity Requirements

You identify activity requirements in the Activity Profile, which serve as criteria to select potential consumer advocate participants for your activity. The profile provides information about your activities'

• Purpose

• Focus
  Examples: prevention, detection, epidemiology, outreach

• Timeframe

• Work requirements
  Examples: background reading, meetings, conference calls

• Skill requirements
  Examples: Internet, writing, speaking

• Other participants

Meeting for an Activity Consultation

Once you complete and submit the Activity Profile, arrange for an activity consultation with a member of the Office of Liaison Activities staff. This consultation

• Establishes a two-way dialogue with NCI staff who have extensive experience working with CARRA members

• Ensures a successful involvement of all CARRA members in science and communications activities

The consultation will seek to

• Clarify the requirements of your activity

• Identify the appropriate number of CARRA members and Mentors for your activity

• Ensure that appropriate CARRA members are selected for your activity

• Provide guidance about involving CARRA members

• Make certain that your orientation adequately prepares CARRA members and other participants for participation in your activity

During the activity consultation, the Office of Liaison Activities staff member assists you in identifying CARRA members' activity-specific Roles and Responsibilities.

Matching CARRA Members to Activities

Office of Liaison Activities staff matches CARRA members as potential participants for your activity based on a combination of

• CARRA Member Information, which CARRA members supplied when they applied to the CARRA Program

• Activity Requirements, which you furnished for your activity

Office of Liaison Activities staff generates a list of CARRA members for your activity from the list of all CARRA members who meet your activity requirements. This list includes the actual number of CARRA members needed plus several alternates.

Finalizing the Activity Profile

Office of Liaison Activities staff reviews the Activity Profile for your activity to create a final activity profile that you provide to all CARRA member participants for your activity. CARRA members' use this Activity Profile, along with general activity information provided in the CARRA member orientation modules, to Assess Their Ability To Participate in your activity.

Making the Initial Call

During the initial call to CARRA members, the Activity Contact should:

• Notify them that they have been requested to participate in an NCI activity

• Notify them that they are being requested because they are CARRA members

• Provide them with the information contained in the Activity Profile

• Assess Their Ability To Participate and initial interest

Finalizing Your CARRA Member List

Contact Liaison Activities when you are ready to finalize your CARRA member list. The purpose is to

• Discuss any concerns that you may have and offer assistance in finalizing your CARRA member list

• Identify orientation modules that will be helpful to your CARRA members

• Address activity-specific orientation needs

Sending the Formal Invitation

Send a formal invitation to all selected participants that includes

• General information about the activity

• Specific information about travel logistics and special forms, such as conflict of interest forms, and background information

Additional Information To Include in CARRA Member Invitations

When sending invitations to CARRA members, you should also include

• Information about

• Their specific role representing the cancer perspective

• Their first assignment or task as a participant

• Any background material they want to review in preparation for the activity

• Any paperwork they may need to complete

• Their orientation for the activity

• The overall timeframe for the activity

• The name and contact information (provided by Liaison Activities) of their CARRA mentor

• Your contact information as their Activity Contact for the activity

Invitation Attachments

Include the following attachments to CARRA member invitations:

• The Activity Profile

• Travel logistics and reimbursement information, as appropriate

• Conflict of interest or other special forms, as appropriate

Note: Office of Liaison Activities staff are available to review the invitations.

How Should I Introduce CARRA Members to My Activity?

Establishing Personal Contact

Establish personal contact with the CARRA members who are participating in your activity in order to foster an open dialogue during your activity.

Some CARRA members

• May be engaging in a new and unfamiliar experience

• May feel intimidated about being involved in a national activity and sitting side by side with prominent scientists and leaders in the field of cancer

Their knowledge will most often be in other fields, yet because of their personal cancer experience they also may have developed considerable knowledge about basic and applied science issues.

Calling the CARRA members who are participating in your activity will provide an important forum for

• Learning more about their background and knowledge of cancer issues

• Addressing questions

• Identifying any special needs that they may have

Reviewing Materials

When CARRA members receive their Activity Profile, give them guidance about assesing their ability to serve. This guidance includes reviewing the

• General Responsibilities of all CARRA members

• General description of the Type of Activity in which they have been asked to participate

• Activity-Specific Responsibilities presented in the initial letter of invitation and the activity description

• The list of Types of Activities provided in the online CARRA member orientation which supplies considerable information about what CARRA members should expect in each type of activity

Review these materials before developing your additional activity-specific orientation to minimize redundancies.

Conducting the Orientation

During your orientation, it is important to provide a clear roadmap of the issues CARRA member participants may expect throughout your specific activity. Address issues different from the general descriptions already provided, such as

• Special review or time requirements

• Unique attention being focused on the activity by NCI, Congress, or the public

• Unusual procedures and approaches being used for the activity

How Can I Achieve a Successful Working Relationship With CARRA Members?

Maintain a Receptive Attitude

Participating in your activity may be a new experience for some CARRA members and they may ask numerous questions as they build a foundation of knowledge necessary to contribute meaningfully. It is important to be receptive and to enable them to be informed, active participants in your activity.

Encourage All Participants To Work Together

Clearly state to all non-CARRA member participants (i.e., NCI staff, scientists, ect.) that CARRA members are participating in your activity, and define the CARRA members' role. Encourage all participants to work together with CARRA members by

• Being respectful toward CARRA members and the perspective that they bring to the activity

• Being attentive and listening to CARRA members' perspectives

• Acting professionally

CARRA members are colleagues and partners. They represent an expertise and experience that most NCI staff and other participants do not have.

Give Extra Guidance

Many of your responsibilities as an Activity Contact are not specific to CARRA members.

Example: All participants need to be well-informed about confidentiality, conflict of interest, and the lobbying policy.

CARRA members, however, may be less familiar with some of these issues. It is very important to provide extra guidance and instruction to CARRA members to ensure that all participants fully understand the importance and implications of these issues.

Provide Guidance About Confidentiality

Most NCI activities involve a discussion or a review of confidential information. In general, confidential information includes

• Any information submitted to NCI for review, such as grant applications, contract proposals, and renewal/status reports

• Any financial, professional, or personal information related to an individual or organization, such as salaries, performance reports, and health information

• Recommendations or proceedings related to funding decisions by NCI

Confidentiality may be inadvertently violated when CARRA members seek assistance in understanding technical or scientific issues. You should remind CARRA members

• Not to duplicate any activity materials

• To leave materials containing confidential information with NCI staff at the end of each activity

IMPORTANT: It is important for you to be receptive to CARRA members' questions and to assist them in developing sufficient understanding to avoid breaches of confidentiality. They are instructed in their orientation to contact you or their mentor for assistance.

Provide Guidance About Conflict of Interest

Conflict of Interest must be avoided at all times. Assessing conflicts of interest can be difficult, particularly for individuals less familiar with procedures for assessing and avoiding conflicts of interest. It is critical that you

• Explain the meaning of conflict of interest in the context of your activity

• Stress the importance of notifying NCI of any potential conflict of interest

• Encourage all participants to ask questions if they are uncertain whether or not a conflict exists

Provide Guidance About the Policy on Lobbying

Be sure to remind CARRA members, as well as other participants in your activities, that they

• Are prohibited from lobbying during CARRA activities

• Should review the online information about Policy on Lobbying

Help With Travel Arrangements and Reimbursements

As you do for all activities involving outside participants, you should provide

• Travel logistics information

• Instructions concerning reimbursement for expenses

CARRA members should receive the same approved travel and expenses as the other participants in your activity.

Handle Problems Proactively

Understand the Problem

Problems can arise in any activity. It is important that you understand the nature and sources of the problem that you are having. There may be

• Misunderstandings about the purpose of your activity

• Differences of opinion about approaches

• Insufficient information or orientation of participants

• A range of other potential issues

Contact Liaison Activities to help you identify the source of participant problems and remedies that meet individuals' needs.

Re-emphasize Key Points

To handle a problem, it is sometimes helpful to re-emphasize the following points privately or to the entire group:

• Each participant's role

• Each participant's responsibilities

• Activity goals

• Respect for all viewpoints

• The need to develop consensus

• The importance of maintaining a professional attitude

Note: If CARRA members have a different view from other participants, remember that they are included for their perspective. We expect vigorous discussions and deliberations. However, we also expect these to occur in a professional and respectful manner. Usually, if a problem occurs in the tone of the discussion, a private conversation with the individual(s) involved will re-establish a professional and productive tone.

IMPORTANT: Do not assume that the problems you may be having with participants are the result of involving CARRA members.

Give Feedback About CARRA Members' Participation

Following each activity involving CARRA members, you will be asked to complete an activity questionnaire to gather your feedback about CARRA member participation. Depending on the depth of your feedback, the questionnaire will require approximately 10 minutes to complete. Your thoughts and experiences as an Activity Contact are used to

• Inform future orientations

• Assist mentors in providing support to CARRA members

• Identify specific problems that need to be addressed

Note: Your feedback is always confidential.

Where Can I Get Help When Working With CARRA Members?

Getting Help To Ensure an Effective Process

Ensuring an effective process for involving CARRA members in your activities is important to the success of your activity. Whether involving CARRA members is new or whether you have considerable experience working side by side with CARRA members, you may need help along the way.

Several sources of assistance have been identified to

• Answer questions

• Provide guidance

• Help you ensure that CARRA members strengthen the processes and outcomes of your activities

NCI Office of Liasion Activities

Liaison Activities is responsible for managing the CARRA program and facilitating the involvement of CARRA members in your activities. The CARRA program manager is the lead point of contact within Liaison Activities for CARRA Members. Contact Liaison Activities by phone, (301) 594-3194, fax, (301) 480-7558, or e-mail, ncicarra@mail.nih.gov.

Mentors

Mentors have prior experience participating in the type of activity for which they have been selected and have volunteered to assist less experienced CARRA members. In addition mentors can help NCI staff of by answering questions, clarifying expectations, and helping address concerns. Each CARRA member is assigned a mentor for each activity in which he/she participates.

Information Resources

The Links to Other Resources describe and provide links to programs that involve CARRA members.

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