# Presentation: 098475

## Advocates in Research Working Group (ARWG) Public Comment Call Kelly Cotter, Chair, ARWG Shannon Bell, Office of Advocacy Relations DirectorNovember 5, 2008

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

**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.

**Notes:**
I am going to begin by reviewing some background information about the Advocates in Research Working Group (ARWG) including:
  The general process for working groups of Federal Advisory Committees
  Who is on the ARWG
  The process we have developed for the Advocates in Research Working Group or ARWG
  and Where we are now in that process.

Then I’m going to turn it over to the ARWG Chair, Kelly Cotter who is going to review the preliminary initiatives the group developed in Phase II.  We are looking to get your feedback on those today.

So, I’ll begin with the rationale for the ARWG – In August 2007 (3 months before my arrival) 
Dr. Niederhuber asked the DCLG to form a working group to provide NCI with recommendations for involving advocates across the spectrum of NCI activities in ways that accelerate progress, benefit patients and improve public health.

Since we have several new members I want to mention that the name of the working group was chosen very intentionally in order to explicitly demarcate our focus on research advocacy.  We are fully aware that there are many different kinds of advocacy within the cancer community – such as – political advocacy, education, fundraising and increasing awareness. However, this working group is appropriately focused solely on advocate participation in the research process.

## General Working Group Process

**General Working Group Process**

**NCI Director**

**Working Group (WG)**

**FACA Group (DCLG)**

**FACA Group (DCLG)**

**WG Report with recommendations**

**NCI Staff**

- _FACA_ = Federal Advisory Committee Act
- _DCLG_ = Director’s Consumer Liaison Group

## Advocates in Research Working Group Membership

**EXTRAMURAL**
**Kirby Bland**
**Paul Bunn, Jr. **
**H. Kim Lyerly**
**John Minna**

**NCI STAFF**
**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* **
**Jeff White **

**ADVOCATES**
**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**
**Jim  Williams, Jr. **

**ADVOCATES**
**Kelly Cotter**
**Vernal Branch**
**Deborah Collyar**
**Peggy Devine**
**Cindy Geoghegan**
**Richard Gorlick**
**Francine Huckaby**
**Paula Kim**
**Gerald (Buddy) Leo**
**Lori Monroe**
**Nancy Roach****Jim Williams, Jr****.**

- Phase I Membership

- Phase II Membership

**NCI STAFF**
**Shannon Bell**
**James Hadley**
**Shamala Srinivas**
**Jaye Viner**

**EXTRAMURAL**
**Paul A. Bunn, Jr.**
** ****H. Kim Lyerly**
** ****John Minna**
** ****C. Kent Osborne**

- * = Alternate Member

## ARWG Process

**ARWG Process**

## Phase I Subgroups

**Disseminate**

**Review**

**Design**

**Advise**

**Phase I Subgroups**

**Experience, Skills and Qualifications**
**Selection Process**
**Training**
**Information and Resources**
**Facilitating Involvement**
**Communication and Feedback **
**Evaluation and Tracking**
**Compensation**

## Phase II Subgroups

**Phase II Subgroups**

**Communication**

## ARWG Process

**ARWG Process**

## Organizational Analysis

**Organizational Analysis**

- Goal of the organizational analysis:
- To gain a better understanding of where and how advocates are being utilized across NCI and throughout NCI-funded activities.
- Rationale:
- 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****.**

## ARWG Process

**ARWG Process**

## Phase II - Initiatives

**Phase II - Initiatives**

**Assess and Qualify Advocate Experience & Skills**
**Create a Code of Conduct**
**Create a Transparent Environment**
**Create a Process for Advocate Involvement **
**Identify Training Opportunities**
**Provide Information and Resources **
**Track and Evaluate**
**Recognize and Promote Successes**

## 1. 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.

**1. Assess and Qualify Advocate Experience and Skills**

## 2.  Create a Code of Conduct

**2.  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.

## 3.  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.

**3.  Create a Transparent Environment**

## Rationale:

- _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.

**4.  Create a Process for Advocate Involvement **

## 5.  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.

**5.  Identify Training Opportunities**

## 6.  Provide Information and Resources 

**6.  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.

## 7.  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.

**7.  Track and Evaluate**

## 8.  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.

**8.  Recognize and Promote Successes**

## Slide 20

## ARWG Process

**ARWG Process**