1. Advocate Engagement in Research Shannon Bell, Director Office of Advocacy Relations National Cancer Institute NCI Division of Cancer Biology New Grantee Workshop October 18, 2010

2. 2 The Advocacy Continuum from the National Coalition for Cancer Survivorship (NCCS) How Do Individuals Become Advocates? Personal Advocacy to Community Advocacy to National Advocacy Personal Advocacy Finding information Getting a second opinion Knowing what questions to ask Working for rights around insurance, employment, privacy, etc. Community Advocacy Support groups Speaking at the local level Community-based fundraising National Advocacy Lobby Congress Federal research advocacy Membership on an FDA committee

3. 3 Types of Advocacy* * Based on a model by advocates Deborah Collyar and Jane Perlmutter Advocacy Support Outreach & Education PolicyFundraisingResearch

4. 4 Types of Advocacy - Definitions Raise funds and awareness Fundraising Help people with cancer with non- medical cancer-related issues Support Increase public awareness of cancer risk and research progress Outreach & Education Lobby and work with lawmakers and policymakers Policy Ensure high-quality research that reflects the patient perspective Research

5. 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. 5

6. 6 Who ISN’T A Research Advocate? Patient ≠ Advocate ≠ Research Advocate Photo Credit: Rhoda Baer Research Advocates Francine Huckaby and Andy Reshke

7. 7 CCOPs/ MBCCOPs CTAC Cancer Centers BSC NCI 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 AdminExtramural Cooperative Groups SPOREs

8. 8 Advocates in Research Working Group Process Phase I Review Foundational Documents & Collect Information Create Framework for Advocacy at NCI Phase II Organizational Analysis: Where & how advocates are being used now Identify Critical Process Points Phase III Develop Implementation Recommendations Final Report

9. Advocacy Roles at NCI Advise Develop recommendations or advice focused on strategic directions or broad policy issues. Design Develop new or enhance existing programs or activities. Review Evaluate and analyze research proposals and ongoing research activities. Disseminate Interpret and communicate scientific information for non-scientific audiences. 9

10. How NCI Engages Advocates An enhanced model of partnership 10

11. Research Advocates – Contributions Contribute lived experience, ie: experiential knowledge Improve research feasibility and probability Simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues Serve as a reminder of what and who we are working for Enhance Research: 11

12. Research Advocates – Contributions Increase public trust; enhanced transparency & accountability Help break down barriers between the public and researchers Establish a conduit for regular communication Give researchers practice discussing their work in clear and understandable ways Enable advocates to better understand and justify the need for science Increase Public Understanding & Support of Research 12

13. Involving Advocates in Basic Research Steering Committees or Advisory Boards Review Boards Communication Projects –Websites –Newsletters Article Review Consultant or Collaborator 13

14. How Advocates Contribute - Communications TermResearch Community Definition Public Definition CureFive-year survival rateNever get it again Clinical TrialResearch studySterile, experiment Treatment FailurePatient failed the treatmentTreatment failed the patient LayAll non-scientistsDown? ChemopreventionDrugs that reduce riskDanger, stay away Carcinoma in situPre-cancer, not to worryCancer, very worried EnvironmentPatient controlled (diet, smoking, etc.) External forces (chemicals, radiation, etc.) Support servicesHelp 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) | 14

15. How to Begin? Contact OARDecide on the advocate’s role Choose a highly-qualified advocate from the slate provided by OAR Connect with the advocate before the first activity to discuss expectations Arrange logistics Follow up with the advocate afterwards to discuss the experience 15

16. 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 16

17. 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 17