Hematologic Cancers- Education and Outreach Strategies CDC Hematologic Grantees Meeting May 15-16, 2008 Anne Willis, MA Cancer Survivor Director of Survivorship Programs

National Coalition for Cancer Survivorship n Oldest survivor-led cancer advocacy organization in the country (22 years old) n Focus on advocacy for quality cancer care n Provide resources for people to advocate for themselves and others as well as tools for policy advocacy

Cancer Survival Toolbox TM n Teaches advocacy skills to help people navigate a cancer diagnosis n Free, award-winning audio program n Evidence-based

Cancer Survival Toolbox n Contains 12 modules: l Communicating l Finding Information l Making Decisions l Solving Problems l Negotiating l Standing Up for Your Rights l First Steps for the Newly Diagnosed l Topics for Older Persons l Finding Ways to Pay for Care l Caring for the Caregiver l Living Beyond Cancer l Dying Well- The Final Stage of Survivorship

Grant Overview n Adapt the existing Toolbox and create 4 additional separate modules: l Multiple Myeloma (Year 1) l Lymphoma (Year 2) l Leukemia (Year 3) l Bone Marrow Transplant (Year 4)

Grant Overview n The modules will also be targeted to specific underserved populations l African Americans (Year 1) l Latinos (Year 2) l American Indians (Year 3)

Grant Overview n Ellen Stovall, Principle Investigator l NCCS President and CEO n Catherine Harvey, DrPH, Project Director n Toolbox Team n Judith Blanchard, Outreach Coordinator n Anne Willis, NCCS’ Director of Survivorship Programs n Jane Koehler, Project Manager

Yearly Deliverables n Literature review on needs of people with each type of cancer, which includes a review of disease-specific resources n Focus group reports from patients/caregivers at multiple sites n Interviews with patients/caregivers n New Toolbox module n Literature review on dissemination strategies for each population n Stakeholder interview report on dissemination strategies for each population

Opportunities for Collaboration n Provide information on disease- specific needs n Share available resources/data n Serve as expert reviewers for new modules n Assist in dissemination

Memorable Moment n Focus group feedback- People with multiple myeloma are looking for something more hopeful since people are living longer with the disease and there are more treatment options.