• Confidentiality
• Conflict of interest
• Lobbying

Because these three topics apply most directly to CARRA participation in peer review, the descriptions below focus on that context. However, these rules also apply to many other situations where CARRA members are participating in an NCI activity, and should be considered as part of CARRA member responsibilities.

• Confidentiality is professionally appropriate whenever a CARRA member is working with NCI projects still in development.
• Conflict of interest should be considered in any situation where a CARRA member's other affiliations intersect with the content or participants in an NCI activity
• Lobbying is prohibited during any CARRA activity, from the time it begins to the time it ends.

CARRA members are encouraged to ask their Activity Contact any questions about how confidentiality, conflict of interest, and lobbying may affect their activity. In addition, whether a CARRA member participates in peer review or not, they need to review the information below.

CARRA members are accepted as full partners and participants in the peer review of clinical and translational research at the National Cancer Institute. To achieve the best possible "full and fair review" all applications are entitled to, a peer review panel includes experts in each of the major arenas spanned by the proposal. CARRA members participate to provide the patient expertise and perspective. In particular, they focus on patient recruitment, retention, and protections (under human subjects guidelines).

All peer review panel members - which includes participating CARRA members - are obligated to respect the rules concerning confidentiality, conflict of interest, and lobbying.

Adhering strictly to the standards and guidelines below has an additional advantage for CARRA members participating in peer review: the CARRA member is seen by scientists on the review panel as someone who is focused only on the merit of the proposal - not on other agendas - and who has committed to function within the same rules as all the other reviewers. The result is increased respect for the CARRA member's participation, and in a broader sense for advocate participation in general.

CARRA activities involve both public and confidential information. While public information can be shared with anyone, confidential information must be treated carefully.

• Confidential information cannot be shared with anyone other than the NCI staff directly involved in that activity.
• Confidential information includes-
  • Any information submitted to NCI for review, such as
    • Grant applications
    • Contract proposals
    • Renewal/status reports
  • Any financial, professional, or personal information related to an individual or organization, such as
    • Salaries
    • Performance reports
    • Health information
  • Recommendations or discussions related to funding decisions by NCI

It is your responsibility to comply with all restrictions regarding confidential information. You must ask the NCI staff member you are working with to specify the confidential information of each activity. Also, do not hesitate to ask any other questions about confidentiality.

Confidentiality is often unknowingly violated when individuals seek assistance in understanding technical or scientific issues. Do not consult anyone outside the immediate project for technical assistance. Once again, you should contact the NCI staff person you are working with for direct assistance or referrals to other staff members.

Depending on the nature of a confidentiality breach, you could void a contract or create a protest that would severely delay or ruin a possible research project. If you think that you have breached confidentiality, alert your NCI staff activity contact immediately.

Definition: Conflict of Interest
A conflict of interest is a situation when you, a family member, friend, or other associate is in a position to gain or lose personally, professionally, or financially from an action that might be taken by NCI.

Actual Conflict of Interest
An actual conflict of interest arises when a CARRA member has or would have official responsibilities (such as an NCI peer review) involving an outside organization with which the CARRA member has an affiliation or a financial interest (his/her own or an interest that would impact the CARRA member). Such a situation puts the CARRA member in the position of having an official responsibility or action that could directly influence his or her own financial interests or those interests that are imputed to him or her (financial interests of spouse, minor children, outside employers, and other entities).

Apparent Conflict of Interest
An apparent conflict of interest arises when a CARRA member is involved in a particular matter involving specific outside parties (including individuals and corporate entities) and the circumstances are such that a reasonable person with knowledge of the relevant facts would question the CARRA member's impartiality in the matter.

Conflict of Interest in Peer Review
At the start and finish of a peer review session, all reviewers are asked to sign forms confirming your adherence to conflict of interest and confidentiality policies. These are important documents.

If you have any question at all about whether your participation in a peer review would constitute a real or apparent conflict of interest - after your initial scan of an application or later after a detailed reading - please immediately inform the Scientific Review Administrator (SRA) for that review. He or she can help make a determination about potential conflict.

Lobbying is any activity intended to influence public officials, involving legislative or other policy decisions. The National Cancer Institute is a government agency, and by law cannot lobby or influence Congress. Therefore, NCI is also prohibited from asking any members of the public, such as CARRA members, to lobby Congress on NCI's behalf.

Lobbying is prohibited during any and all CARRA-related activities, including local meetings and travel events. The prohibition against lobbying includes the full timeframe of the activity, from the moment the activity starts until it is officially adjourned.

For peer review meetings, no lobbying or lobby-related activities can take place between the time the meeting begins until it is adjourned. For example, if a two-day peer review panel meets on Tuesday through Wednesday, no lobbying or lobby-related activities can take place between the time the meeting begins on Tuesday until the time the meeting ends on Wednesday.

The prohibition against lobbying, in addition to being illegal, makes sense in relation to these points:

• The purpose of the CARRA program is to ensure that the advocate voice is brought to the National Cancer Institute. CARRA members are selected to help represent the patient and caretaker perspectives to NCI's research and related activities - not to be a representative of NCI or the CARRA program to other organizations or activities.
• CARRA members participate in NCI activities as representatives of a large number of cancer patients across the country. Therefore, CARRA members should not attempt to further their own agendas, or the agendas of the advocacy or constituency groups they belong to, while participating in NCI or CARRA-related activities.

NOTE: CARRA members are not at all restricted in their roles as private citizens or as representatives of their advocacy organizations, as long as their actions or words:

• Do not take place during NCI or CARRA-related activities
• Do not in any way claim to - or appear to - represent or speak for NCI or for the CARRA program.
• Do not reference their CARRA affiliation as a sole or primary affiliation

Please also see Appropriate and Limited Use of Identification as a CARRA Member for further explanations.