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Examining Advances in the Management of Breast Cancer - Mary Lou Smith - 7th Annual Breast Health Summit
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Examining Advances in the Management of Breast Cancer - Mary Lou Smith - 7th Annual Breast Health Summit

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  • 1. SURVIVORS SUPPORTING SCIENCE Mary Lou Smith Presentation to Texas Breast Health Collaborative October, 2011
  • 2. WHAT IS ADVOCACY? Advocacy- speaking or writing in support of something
  • 3. History of Advocacy1900s 1960s 1970s 1980s 1990s 2000s 2010s Suffrage Civil Rights AIDS Women’s Movement National Cancer Act Cancer Advocacy Begins Advocates join Cooperative Groups Advocates join Peer Review for DoD and others FDA starts Patient Consultant Program Research Advocacy Network formedAdapted from Coalition of National Cancer Cooperative Groups Training ProgramAdvocate Handbook “Rules of the Road”
  • 4. HISTORY OF SUPPORTING CANCER RESEARCHSusan G Komen for the Cure National Breast Cancer Coalition Committed to ending breast Increased federal funding cancer forever by energizing for breast cancer research science to find the cures Worked to establish the Invested 1.9 Billion in cancer Dept of Defense(DOD)Breast research Cancer Research Program Partnered or funded programs • Advocate at the table when in more than 50 countries ever decisions are made Provided more than $27 • Has provided $2.53 billion million in funding for since 1992 international breast cancer research • $150 million in FY11 • 5,839 awards in FY92-09
  • 5. RESEARCH ADVOCACY  Newest type of cancer advocacy  Primary goal is to interact with the research community  Brings the patient voice to the research and a sense of urgency to the process  Provides their skills, education, experiences and most of all passion to research
  • 6. PARTNERSHIP BETWEEN ADVOCATES AND RESEARCHERS  RAN has identified points along the research continuum where advocates can make a difference by bringing the patient perspective to the research process  Here are 4 examples from our work  Focus groups to provide questions important to patients  TAILORx trial  BRAF mutation brochure  Focus on Research Program
  • 7. QUESTIONS IMPORTANT TO PATIENTS Metastatic Breast Cancer Network  Not pink  Studied to get better treatments for early stage disease  5% of research dollars go to metastatic disease  Provided 10 questions  ECOG studies  E2108  Long-lived metastatic patients  Which patients benefit from which chemotherapies
  • 8. DESIGN OF TAILORX TRIAL Can the results of Oncotype DX be used to recommend treatment? 10,000 women Conducted focus groups of patients and advocates Did not change the question Did change the design  All the patients received the test  Only the intermediate group randomized
  • 9. BROCHURE EXPLAINING THE BRAF MUTATION Contacted by Pharma to develop a brochure  Not drug specific  RAN owns the copyright Developed a draft and tested it with patients  Delete information about the science  Provide benefits and risks  Revised and retested
  • 10. RESEARCH DISSEMINATION AND FOCUS ON RESEARCH PROGRAM Structured program to equip advocates to attend scientific meetings and take the information reported at the meeting to a patient constituency  Curriculum and preparatory webinars  Develop backgrounders  Network with other research advocates from different disease sites and other organizations  Opportunities to discuss with researchers  Identify a “Research Dissemination Partner” in their community  Report back to class and patient constituency
  • 11. ENGAGE THE ADVOCACY COMMUNITYDevelop true partnerships of community engagement  Patient-focused  Each partner gives and each partner gets  Outcomes  The science moves forward  The community is recognizedHow advocates can help in a time of less resources  Bring the community perspective  Increase tissue awareness and donation  Comparative Effectiveness Research
  • 12. “Never doubt that a small group of thoughtful, committed citizens canchange the world. Indeed, it is the only thing that ever has.” Margaret Mead www.researchadvocacy.org

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