Patient / Advocate Communities

1
Patient / Advocate Communities
Mission and Priorities Expectations of Federal
Research Programs
2
Research Accountability

• Impact?IMMEDIATE
• What are our Tax Dollars Buying
• Communicate
• What does research mean to the patient
• Eliminate redundancy
• Support creativity outside of established centers
• Building infrastructure and intellectual Capital

3
Research Performance Measurement

• Are we winning the war against Pca
• How do we know
• How do we measure
• Black Population
• Disproportionate negative impact
• Greatest short term need
• What is the low hanging fruit
• Education
• Access
• Early Detection
• Comparative funding
• Parity among cancers

4
Expectations

• Survivorship
• What is being done to extend my life NOW
• Focus
• On the patient, not the system
• Results
• Need balance between the future and present
• Think Globally
• Utilize data and results from the rest of the
  world

5
Complicating the Issue

• Women vs. Men
• Comparable incidence and mortality
• Research funds - 3X for breast cancer
• Public health staffing - inconsistent
• Government commitment - no agencies
• Media focus - inordinately female focus
• Men dont communicate