Advocates in Research Working Group

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 on this page about the ARWG:

     Public Input
     Process
     Meeting Summaries
     Membership

Public Input

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

Shannon Bell, Director
Office of Advocacy Relations, NCI
Building 31, Room 10A28
31 Center Drive, MSC 2580
Bethesda, MD 20892-2580

or in an email to Shannon Bell at nciadvocacywg@mail.nih.gov.

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
Final report to DCLG ~ October 2009

Public Comment Period - November, 2009

Final Report - Spring, 2010

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. L. Michelle Bennett	Center for Cancer Research, NCI Program Staff
17.	Ms. Jane Daye	Center to Reduce Cancer Health Disparities, NCI Program Staff
18.	Ms. Jean Lynn	Coordinating Center for Clinical Trials, NCI Program Staff
19.	Ms. Erin Baney	Division of Cancer Biology, NCI Program Staff
20.	Dr. Brenda Edwards	Division of Cancer Control and Population Sciences, NCI Program Staff
21.	Dr. Judith Swan*	Division of Cancer Control and Population Sciences, NCI Program Staff
22.	Dr. Sudhir Srivastava	Division of Cancer Prevention, NCI Program Staff
23.	Ms. Andrea Denicoff	Division of Cancer Treatment and Diagnosis, NCI Program Staff
24.	Dr. Ted Trimble*	Division of Cancer Treatment and Diagnosis, NCI Program Staff
25.	Dr. Shamala Srinivas	Division of Extramural Activities, NCI Program Staff
26	Dr. Jennifer Loud	Division of Epidemiology and Genetics, NCI Program Staff
27.	Ms. Shannon Bell	Office of Advocacy Relations, NCI Program Staff
28.	Dr. Kimberly Myers	Office of Biorepositories and Biospecimen Research, NCI Program Staff
29.	Dr. Julia Rowland	Office of Cancer Survivorship, NCI Program Staff
30.	Dr. Nancy Breen*	Applied Research Program, Division of Cancer Control and Population Sciences, NCI Program Staff
31.	Ms. Nina Ghanem	Office of Communications and Education, NCI Program Staff
32	Dr. Jeff White	Office of Complementary and Alternative Medicine, NCI Program Staff
33	Ms. Susan Erickson	Office of Government and Congressional Relations, NCI Program Staff
34	Ms. Jeanette Contreras*	Office of Government and Congressional Relations, NCI Program Staff
35	Dr. Margaret Ames	Office of Science Planning and Assessment, NCI Program Staff
36	Dr. Lisa Stevens*	Office of Science Planning and Assessment, NCI Program Staff
37	Ms. Karen Creamer	Coalition of Cancer Cooperative Groups, Partner Organization
38	Ms. Margo Michaels	Education Network to Advance Cancer Clinical Trials, Partner Organization
39	Dr. Syed Ahmed	National Institutes of Health Council of Public Representatives, Partner Organization
40.	Ms. Ann-Gel Palermo*	National Institutes of Health Council of Public Representatives, Partner Organization
41.	Ms. Jane Perlmutter	Advocate At Large
*	Indicates Alternate

In addition to the ARWG membership, many individuals provided additional input and expertise during Phase III. They are:

Ms. Jennifer Loukissas, NCI Program Staff
Ms. Sandra Thomas, NCI Program Staff
Dr. Hasnaa Shafik, NCI Program Staff
Ms. Linda Parreco, NCI Program Staff

Ms. Gwen Darien, DCLG Chair

Ms. Margaret Gaines, Advocate
Ms. Juanita Lyle, Advocate
Ms. Elda Railey, Advocate
Ms. Lillie Shockney, Advocate
Ms. Susan Brown, Advocate
Ms. Mary Jackson Scroggins, Advocate
Ms. Sharon Terry, Advocate
Ms. Mary Lou Smith, Advocate
Mr. Lee Moultrie, Advocate

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