Hematologic Cancers- Education and Outreach Strategies

CDC Hematologic Grantees Meeting

May 15-16, 2008

Anne Willis, MACancer SurvivorDirector of Survivorship Programs

National Coalition for Cancer Survivorship Oldest survivor-led cancer advocacy

organization in the country (22 years old)

Focus on advocacy for quality cancer care

Provide resources for people to advocate for themselves and others as well as tools for policy advocacy

Cancer Survival ToolboxTM

Teaches advocacy skills to help people navigate a cancer diagnosis

Free, award-winning audio program Evidence-based

Cancer Survival Toolbox Contains 12 modules:

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

Grant Overview Adapt the existing Toolbox and create

4 additional separate modules:

Multiple Myeloma (Year 1) Lymphoma (Year 2) Leukemia (Year 3) Bone Marrow Transplant (Year 4)

Grant Overview The modules will also be targeted to

specific underserved populations

African Americans (Year 1) Latinos (Year 2) American Indians (Year 3)

Grant Overview Ellen Stovall, Principle Investigator

NCCS President and CEO

Catherine Harvey, DrPH, Project Director Toolbox Team Judith Blanchard, Outreach Coordinator Anne Willis, NCCS’ Director of

Survivorship Programs Jane Koehler, Project Manager

Yearly Deliverables Literature review on needs of people with each

type of cancer, which includes a review of disease-specific resources

Focus group reports from patients/caregivers at multiple sites

Interviews with patients/caregivers New Toolbox module Literature review on dissemination strategies for

each population Stakeholder interview report on dissemination

strategies for each population

Opportunities for Collaboration Provide information on disease-

specific needs Share available resources/data Serve as expert reviewers for new

modules Assist in dissemination

Memorable Moment 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.