Advocates in Research Working Group

Working Groups
- Advocates in Research Working Group

The mission of the Advocates in Research Working Group is to develop and provide recommendations to the DCLG on how NCI can more consistently integrate advocate involvement across the Institute to ensure that the patient-advocate perspective is appropriately represented. The DCLG will receive the recommendations and will then advise the NCI Director.

To jump directly to more information about the ARWG:

Process

Public Comment

Meeting Summaries

Membership

Process

Introduction ~ September 2007

Finalize ARWG charge
Membership formation

Phase I ~ March 2008

Analyze background information
Develop early findings and ideal model

Phase II ~ Early 2009

Preliminary analysis of where and how advocates are involved at NCI and across NCI funded activities
Develop initiatives to address barriers and missed opportunities

Phase III

Develop implementation plans for each initiative ~ March 2009
Write final report ~ October 2009

Public Input

SPECIAL PUBLIC COMMENT TELECONFERENCE & WEBINAR
Advocates in Research Working Group Public Comment
Wednesday, November 5, 2008 from 3:00 - 4:30 p.m. (ET)

PowerPoint Slide Presentation
Text-only Version

NCI wants to hear from all segments of the advocacy community about the best way to involve advocates in research. This is an opportunity to provide public comment on the work of the Advocates in Research Working Group (ARWG). The NCI Director asked the ARWG to provide recommendations on the most effective ways to consistently involve advocates in NCI activities.

A replay of the call was available for 30 days after the call. Public comments or questions are welcome at any time at nciadvocacywg@mail.nih.gov.

Written input will be accepted and considered throughout the process. Please address your written statement to:

James Hadley
Advocacy Relations Manager
Office of Advocacy Relations, NCI
Building 31, Room 10A28
31 Center Drive, MSC 2580
Bethesda, MD 20892-2580

or in an email to James Hadley at nciadvocacywg@mail.nih.gov. Notice will also be given on this website of public teleconferences where input can be provided before the final report is submitted.

Meeting Summaries

Working Group meeting summaries will be posted here after they are finalized. Click on the meeting date(s) below to view the summary of the meeting you are interested in.

March 5, 2008

January 30, 2008

December 12, 2007

November 11, 2007

Membership

Members represent various interests in the research advocacy community. Members include advocates who work with Cancer Centers, advocates who work in SPORE grants, research advocates in the community, extramural investigators, and NCI program staff.

Members were appointed by NCI leadership. NCI encourages all advocates to funnel any input they may have to members.

Current Working Group Members

1.	Ms. Kelly Cotter	Working Group Chair, DCLG Member
2.	Col. (Ret.) James Williams, Jr.	Advocate Member at Large
3.	Ms. Paula Kim	Biorepositories and Biospecimen Research Program Advocate
4.	Ms. Peggy Devine	Consumer Advocates in Research and Related Activities Member
5.	Dr. Richard Gorlick	Consumer Advocates in Research and Related Activities Member
6.	Ms. Vernal Branch	Advocate Member at Large
7.	Ms. Jane Reese-Coulbourne	Advocate Member at Large
8.	Ms. Nancy Roach	Clinical Trials Cooperative Group Advocate
9.	Ms. Francine Huckaby	NCI-Designated Cancer Centers Advocate
10.	Dr. Paul A. Bunn, Jr.	University of Colorado at Denver and Health Sciences Center
11.	Dr. H. Kim Lyerly	Duke University Cancer Center
12.	Ms. Jane Condon	Specialized Programs of Research Excellence Program Advocate
13.	Ms. Deborah Collyar	Specialized Programs of Research Excellence Program Advocate
14.	Ms. Cindy Geoghegan	Specialized Programs of Research Excellence Program Advocate
15.	Dr. John Minna	Chair SPORE Executive Committee, University of Texas Southwestern Medical Center
16.	Dr. C. Kent Osborne	SPORE Principal Investigator, Baylor Medical School Cancer Center
17.	Dr. L. Michelle Bennett	Center for Cancer Research, NCI Program Staff
18.	Dr. Jane Daye	Center to Reduce Cancer Health Disparities, NCI Program Staff
19.	Ms. Jean Lynn	Coordinating Center for Clinical Trials, NCI Program Staff
20.	Ms. Erin Baney	Division of Cancer Biology, NCI Program Staff
21.	Dr. R. Allan Mufson	Division of Cancer Biology, NCI Program Staff
22.	Dr. Brenda Edwards	Division of Cancer Control and Population Sciences, NCI Program Staff
23.	Dr. Judith Swan*	Division of Cancer Control and Population Sciences, NCI Program Staff
24.	Dr. Sudhir Srivastava	Division of Cancer Prevention, NCI Program Staff
25.	Ms. Andrea Denicoff	Division of Cancer Treatment and Diagnosis, NCI Program Staff
26.	Dr. Ted Trimble*	Division of Cancer Treatment and Diagnosis, NCI Program Staff
27.	Dr. Shamala Srinivas	Division of Extramural Activities, NCI Program Staff
28.	Dr. Jennifer Loud	Division of Epidemiology and Genetics, NCI Program Staff
29.	Ms. Shannon Bell	Office of Advocacy Relations, NCI Program Staff
30.	Mr. James Hadley	Office of Advocacy Relations, NCI Program Staff
31.	Dr. Kimberly Myers	Office of Biorepositories and Biospecimen Research, NCI Program Staff
32.	Dr. Julia Rowland	Office of Cancer Survivorship, NCI Program Staff
33.	Dr. Nancy Breen*	Applied Research Program, Division of Cancer Control and Population Sciences, NCI Program Staff
34.	Ms. Nina Ghanem	Office of Communications and Education, NCI Program Staff
35.	Dr. Jeff White	Office of Complementary and Alternative Medicine, NCI Program Staff
36.	Ms. Susan Erickson	Office of Government and Congressional Relations, NCI Program Staff
37.	Ms. Jeanette Contreras*	Office of Government and Congressional Relations, NCI Program Staff
38.	Dr. Margaret Ames	Office of Science Planning and Assessment, NCI Program Staff
39.	Dr. Lisa Stevens*	Office of Science Planning and Assessment, NCI Program Staff
40.	Ms. Karen Creamer	Coalition of Cancer Cooperative Groups, Partner Organization
41.	Ms. Margo Michaels	Education Network to Advance Cancer Clinical Trials, Partner Organization
42.	Dr. Syed Ahmed	National Institutes of Health Council of Public Representatives, Partner Organization
43.	Ms. Ann-Gel Palermo*	National Institutes of Health Council of Public Representatives, Partner Organization
*	Indicates Alternate

Members of the ARWG in Phase I

Ms. Kelly Cotter, ARWG Chair, DCLG member
Col. (Ret.) James Williams, Jr., DCLG member
Ms. Paula Kim, Biospecimens and Biorepositories program
Ms. Peggy Devine, CARRA member
Dr. Richard Gorlick, CARRA member
Ms. Vernal Branch, Member-at-Large
Ms. Nancy Roach, Cooperative Group advocate
Ms. Francine Huckaby, Cancer Center advocate
Mr. Gerald (Buddy) Leo, Cancer Center advocate
Dr. Paul A. Bunn, Jr., Cancer Center Director
Dr. H. Kim Lyerly, Cancer Center Director
Dr. Kirby I. Bland, SPORE Principal Investigator
Ms. Deborah Collyar, SPORE advocate
Ms. Cindy Geoghegan, SPORE advocate
Ms. Lori Monroe, SPORE advocate
Dr. John Minna, SPORE Executive Committee Chair
Dr. Shamala Srinivas, NCI Program Staff
Dr. Jaye Viner, NCI Program Staff
Ms. Shannon Bell, Office of Advocacy Relations
Mr. James Hadley, Office of Advocacy Relations