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 Advocacy
1900s 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 formed
Adapted from Coalition of National Cancer Cooperative Groups Training Program
Advocate Handbook “Rules of the Road”

5. HISTORY OF SUPPORTING CANCER RESEARCH
Susan 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. “Never doubt that a small group of
thoughtful, committed citizens can
change the world. Indeed, it is the only
thing that ever has.”
Margaret Mead
www.researchadvocacy.org