advocate engagement in research shannon bell, director office of advocacy relations national cancer...
TRANSCRIPT
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: [email protected]
Phone: 301.594.3194
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