**A presentation of the National Cancer Institute (NCI), National
Institutes of Health, Department of Health and Human Services**

**The NCI Advocates in Research Working Group (ARWG) Public Comment
Call\
\
Presented by Kelly Cotter, Chair, ARWG and Shannon Bell, Office of
Advocacy Relations Director\
November 5, 2008**

# Rationale for the Advocates in Research Working Group (ARWG)

ARWG Charge:

To harness the knowledge, experience, and leadership of the Working
Group to capture a clear picture of where and how advocates are
successfully expediting advances in cancer research.

To provide NCI with recommendations for involving advocates across the
spectrum of NCI activities in ways that will accelerate progress,
benefit patients, and improve public health.

# General Working Group Process

This slide shows the process for a working group of a Federal Advisory
Committee Act (or FACA) group. The working group is always formed as a
subcommittee of a FACA group (in this case the NCI Director's Consumer
Liaison Group). The working group then decides on a process to create a
report or recommendations to the FACA group. The FACA group then votes
to accept, or not, those recommendations or report. If the FACA group
accepts the report, it is then forwarded to the appropriate Federal
Agency leadership as a formal recommendation of the FACA group. In this
case, the appropriate leadership is the NCI Director. The NCI Director
then can chose to accept or reject the recommendations and instructs NCI
staff on implementation of recommendations.

# Advocates in Research Working Group Membership

The membership of the ARWG was expanded between the group's work in its
first phase and its second phase. In Phase One of its work the advocate
members of the group were: Kelly Cotter, Vernal Branch, Deborah Collyar,
Peggy Devine, Cindy Geoghegan, Richard Gorlick, Francine Huckaby, Paula
Kim, Gerald (Buddy) Leo, Lori Monroe, Nancy Roach, and Jim Williams, Jr.
The extramural members of the group were: Kirby Bland, Paul Bunn, Jr. ,
H. Kim Lyerly, and John Minna. The NCI staff members of the group were:
Shannon Bell, James Hadley, Shamala Srinivas, and Jaye Viner.

In Phase Two of its work the membership was expanded. In Phase Two the
advocate members of the group are: Syed Ahmed, Vernal Branch, Deborah
Collyar, Jane Condon, Kelly Cotter, Karen Creamer, Peggy Devine, Cindy
Geoghegan, Richard Gorlick, Francine Huckaby, Paula Kim, Margo Michaels,
Ann-Gel Palermo\*, Jane Reese-Coulbourne, Nancy Roach, and Jim Williams,
Jr. The extramural members of the group in Phase Two were the same as in
Phase One. The NCI staff members in Phase Two include: Margaret Ames,
Shannon Bell, Michelle Bennett, Nancy Breen\*, Jeanette Contreras\*,
Jane Daye, Andrea Denicoff, Brenda Edwards, Susan Erickson, Nina Ghanem,
James Hadley, LeeAnn Jensen, Jennifer Loud, R. Allan Mufson, Kimberly
Myers, Julia Rowland, Shamala Srinivas, Sudhir Srivastava, Lisa
Stevens\*, Judith Swan, Anne Tatem\*, Ted Trimble\* , and Jeff White.
Any member with an asterisk next to their name is an alternate member.

# ARWG Process

The ARWG has used a work process with four components: Introduction,
Phase One, Phase Two, and Phase Three. The Introduction period was when
the formal charge to the working group was developed and members were
chosen. Phase One consists of analyzing background information,
developing some early findings, and developing the ideal model of
advocacy involvement. Phase Two consists of conducting an organizational
analysis and developing initiatives. Phase Three consists of developing
implementation recommendations and the final report.

# Phase One Subgroups

In Phase One four subgroups were formed: Review, Advise, Design, and
Disseminate. Each subgroup discussed several topic areas: experience,
skills and qualifications; selection process; training; information and
resources; facilitating involvement; communication and feedback;
evaluation and tracking; and compensation.

# Phase Two Subgroups

In Phase Two four different subgroups were formed: Preparation,
Initiation, Activity, and Maintenance. The Preparation subgroup
discussed necessary experience; skill sets and qualifications; and
training. The Initiation subgroup discussed the selection process;
ethics issues; and compensation. The Activity subgroup discussed the
process for facilitating involvement; and information and resources. The
Maintenance subgroup discussed evaluation and tracking. All four
subgroups discussed communication.

# Organizational Analysis (A Step in Phase Two)

The goal of the organizational analysis is to gain a better
understanding of where and how advocates are being utilized across NCI
and throughout NCI-funded activities. The rationale for this analysis is
that the comprehensive and relevant information from the organizational
analysis will help NCI identify best practices, potential barriers, and
future opportunities for advocate involvement. The analysis will provide
us with vital baseline information that will help us develop effective
implementation plans.

# Phase Two -- Initiatives

1.  Assess and Qualify Advocate Experience & Skills

2.  Create a Code of Conduct

3.  Create a Transparent Environment

4.  Create a Process for Advocate Involvement

5.  Identify Training Opportunities

6.  Provide Information and Resources

7.  Track and Evaluate

8.  Recognize and Promote Successes

# Assess and Qualify Advocate Experience and Skills

Rationale:

Developing metrics to assess and qualify research advocate experience
and skills will:

-   Improve alignment between each activity and the advocate selected.

-   Enable transparent communication between NCI and advocates.

-   Capture the depth and breadth of advocate experience.

# Create a Code of Conduct

Rationale:

Developing a Code of Conduct or Operating Principles for involving
advocates in research will:

-   Create shared expectations in support of productive relationships.

-   Create guidelines around issues such as ethics, confidentiality,
    conflict of interest, compensation, etc.

-   Provide a reference point for the community.

# Create a Transparent Environment

Rationale:

Increasing transparency and public accountability will:

-   Increase public trust in cancer research activities.

-   Maximize understanding of NCI activities.

-   Identify opportunities for advocate involvement.

# Create a Process for Advocate Involvement

Rationale:

Creating a common process for advocate involvement will:

-   Increase support for NCI Divisions, Offices and Centers who involve
    advocates by designing user-friendly customizable tools and
    resources.

-   Enhance the opportunity to identify where, how, and when to most
    effectively engage advocates.

-   Create a foundation for roles, expectations and desired outcomes.

-   Improve efficiency.

# Identify Training Opportunities

Rationale:

Building on existing resources to identify and address gaps in knowledge
and experience will:

-   Prepare researchers and program staff to effectively engage
    advocates.

-   Ensure advocates have the knowledge necessary to fully participate.

-   Provide a blueprint to keep advocates informed regarding
    cutting-edge science and advocate opportunities.

# Provide Information and Resources

Rationale:

Building on existing resources to identify and address gaps in knowledge
and experience will:

-   Prepare researchers and program staff to effectively engage
    advocates.

-   Ensure advocates have the knowledge necessary to fully participate.

-   Provide a blueprint to keep advocates informed and able to fully
    participate as partners.

# Track and Evaluate

Rationale:

Building on existing systems to track and evaluate advocate involvement
will:

-   Establish parameters and milestones for success.

-   Allow NCI to report on advocate involvement.

-   Allow for identification of additional opportunities for advocate
    engagement.

-   Allow for the identification of specific recruitment needs.

-   Measure the effect of advocate involvement in order to facilitate
    continuous improvement.

# Recognize and Promote Successes

Rationale:

Recognizing advocates and the researchers who successfully involve them
will:

-   Encourage greater collaboration and exchange.

-   Demonstrate appreciation for advocates and researchers.

-   Provide greater awareness.

# Relationship Between Phase One Focus Areas and Phase Two Initiatives

Initiative one, Assess and Qualify Advocate Experience & Skills, is
related to: experience, skills and qualifications; selection process;
facilitating involvement; evaluation; and tracking.

Initiative two, Create a Code of Conduct, is related to: training;
information and resources; facilitating involvement; and ethics and
compensation.

Initiative three, Create a Transparent Environment, is related to:
experience, skills and qualifications; selection process; training;
information and resources; facilitating involvement; evaluation;
tracking; and ethics and compensation.

Initiative four, Create a Process for Advocate Involvement, is related
to: experience, skills and qualifications; selection process; training;
information and resources; facilitating involvement; evaluation;
tracking; and ethics and compensation.

Initiative five, Identify Training Opportunities, is related to:
experience, skills and qualifications; training; information and
resources; and facilitating involvement.

Initiative six, Provide Information and Resources, is related to:
training; information and resources; and facilitating involvement.

Initiative seven, Track and Evaluate, is related to: experience, skills
and qualifications; selection process; facilitating involvement;
evaluation; and tracking.

Initiative eight, Recognize and Promote Successes, is related to:
facilitating involvement; evaluation; and tracking.

# ARWG Process -- Next Steps

Phase three comes next and that includes developing implementation
recommendations and writing the final report.