SURVIVORS SUPPORTING SCIENCE

Mary Lou Smith Presentation to Texas Breast Health Collaborative October, 2011

WHAT IS ADVOCACY?

Advocacy- speaking

or writing in

support of

something

History of Advocacy

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

1900s 1960s 1970s 1980s 1990s 2000s 2010s

Advocates join Cooperative Groups

Cancer Advocacy Begins

Women’s Movement

Suffrage Civil Rights AIDS

National Cancer Act

Research Advocacy

Network formed

FDA starts Patient

Consultant Program

Advocates join Peer Review

for DoD and others

Susan G Komen for the Cure

Committed to ending breast cancer forever by energizing science to find the cures

Invested 1.9 Billion in cancer research

Partnered or funded programs in more than 50 countries

Provided more than $27 million in funding for international breast cancer research

National Breast Cancer Coalition

Increased federal funding for breast cancer research

Worked to establish the Dept of Defense(DOD)Breast Cancer Research Program

• Advocate at the table whenever decisions are made

• Has provided $2.53 billion since 1992

• $150 million in FY11

• 5,839 awards in FY92-09

HISTORY OF SUPPORTING CANCER RESEARCH

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

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

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

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

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

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

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

“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