advocate engagement in research shannon bell, director office of advocacy relations national cancer...

Advocate Engagement in Research

Shannon Bell, DirectorOffice of Advocacy Relations

National Cancer Institute

NCI Division of Cancer Biology New Grantee WorkshopOctober 18, 2010

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The Advocacy Continuum from the National Coalition for Cancer Survivorship (NCCS)

How Do Individuals Become Advocates?Personal Advocacy to Community Advocacy to National Advocacy

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Types of Advocacy** Based on a model by advocates Deborah Collyar and Jane Perlmutter

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Types of Advocacy - Definitions

Research Advocate – Definition

Definition:• A research advocate brings a non-scientific

viewpoint to the research process and communicates a collective patient perspective.

Note:• A collective patient perspective is created when the

person has knowledge of multiple disease experiences and conveys this collective perspective rather than exclusively his or her own experience.

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Who ISN’T A Research Advocate?

Patient ≠ Advocate ≠ Research Advocate

Photo Credit: Rhoda BaerResearch Advocates

Francine Huckaby and Andy Reshke

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CCOPs/MBCCOPs

CTAC

CancerCenters

BSCNCI Office of the Director

Divisions Centers

OAR

OSPA

OCE

NCAB

BSA

TCGA

CRCHD

DCLG

DEA

DCTD

DCP

DCCPS

DCEG

DCB

CCR

CBIIT

CCCT

OCG

ONano

OBBR

Admin Extramural

CooperativeGroups

SPOREs

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Advocates in Research Working GroupProcess

Advocacy Roles at NCI

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How NCI Engages AdvocatesAn enhanced model of partnership

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Research Advocates – Contributions

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Research Advocates – Contributions

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Involving Advocates in Basic Research

• Steering Committees or Advisory Boards

• Review Boards

• Communication Projects– Websites– Newsletters

• Article Review

• Consultant or Collaborator

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How Advocates Contribute - Communications

Term Research Community Definition

PublicDefinition

Cure Five-year survival rate Never get it again

Clinical Trial Research study Sterile, experiment

Treatment Failure Patient failed the treatment Treatment failed the patient

Lay All non-scientists Down?

Chemoprevention Drugs that reduce risk Danger, stay away

Carcinoma in situ Pre-cancer, not to worry Cancer, very worried

Environment Patient controlled (diet, smoking, etc.)

External forces (chemicals, radiation, etc.)

Support services Help to get the work done (pathology, biochemistry, etc.)

Services to help fit cancer into regular life

Collyar, Deborah (2005). How have patient advocates in the United States benefited cancer research? Nature Reviews Cancer 5, 73-78 (January 2005) |

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How to Begin?

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Keys to Success

• Willingness to consult with non-scientists• Engage an advocate early• Involve the advocate throughout the

project• Develop rapport and ongoing

communication• Be flexible

– Diverse perspectives– Innovations

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NCI Office of Advocacy Relations

Director: • Shannon K. Bell

Advocacy Relations Mangers:• Amy Bulman, Deputy Director• Ben Carollo• Deborah Langer• Brooke Leggin

Online: http://Advocacy.cancer.gov

Email: nciadvocacy@mail.nih.gov

Phone: 301.594.3194

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