Bar-Cohen - Effectively Representing the Advocate Perspective in Advisory Settings


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Bar-Cohen - Effectively Representing the Advocate Perspective in Advisory Settings

  1. 1. Effectively Representing the Advocate Perspective in Advisory Settings Annette Bar-Cohen, MA, MPH Executive Director, Center for NBCC Advocacy Training National Breast Cancer Coalition
  2. 2. The National Breast Cancer Coalition is… <ul><li>A coalition of hundreds of organizations and thousands of individuals since 1991 </li></ul><ul><li>Goals: </li></ul><ul><ul><li>Research, Access and Influence </li></ul></ul><ul><li>Grassroots advocacy, evidence-based </li></ul><ul><li>Many accomplishments over the years </li></ul><ul><li>But….not enough…so launched… </li></ul><ul><li>Breast Cancer Deadline 2020 ® </li></ul>
  3. 3. Breast Cancer Deadline 2020 ® <ul><li>Mission: end breast cancer by January 1, 2020 </li></ul><ul><li>Strategic plan </li></ul><ul><ul><li>Reinvigorate a sense of urgency </li></ul></ul><ul><ul><li>New way to collaborate, out of the box thinking </li></ul></ul><ul><ul><li>Focus on: Prevention of metastasis, primary prevention of breast cancer and prophylactic vaccine </li></ul></ul><ul><li>A key ingredient – Educated Advocates </li></ul>
  4. 4. Educated Consumers at tables whenever meaningful breast cancer decisions made <ul><li>What Does That Really Mean? </li></ul><ul><li>Find the tables and secure the seats </li></ul><ul><li>Figure out what an “educated consumer” is and find some! </li></ul><ul><li>Define “meaningful” decisions </li></ul>
  5. 5. Taking A Meaningful Seat at the Table…
  6. 6. Creating Tables and Taking Seats <ul><li>DoD Breast Cancer Research Program </li></ul><ul><ul><li>Creating the Program </li></ul></ul><ul><ul><li>Ground-breaking role for advocates </li></ul></ul><ul><ul><ul><li>Integration Panel, Vision Setting, Peer Review, </li></ul></ul></ul><ul><ul><ul><li>Era of Hope </li></ul></ul></ul><ul><ul><li>Innovative grant mechanisms </li></ul></ul><ul><ul><li>Accountability, transparency </li></ul></ul><ul><ul><li>But where are the educated consumers?? </li></ul></ul>
  7. 7. Educating Breast Cancer Consumers: The Birth of Project LEAD® <ul><li>A Teach-in for the NBCC Board led to </li></ul><ul><li>the first Project LEAD course in 1995 </li></ul><ul><ul><li>Curriculum created by advocates, educators and scientists </li></ul></ul><ul><ul><li>Foundational, basic concepts, language of science </li></ul></ul><ul><ul><li>Built on adult learning principles </li></ul></ul><ul><ul><li>Outstanding teachers </li></ul></ul><ul><ul><li>Highly committed students </li></ul></ul>
  8. 8. Teaching Science to Adult Learners
  9. 9. Center for NBCC Advocacy Training <ul><li>Multiple courses, different levels, areas of focus, geographic locations </li></ul><ul><li>Research Advocacy - Project LEAD </li></ul><ul><ul><ul><li>Project Lead Institute, Workshop, Clinical Trials </li></ul></ul></ul><ul><ul><ul><li>Quality Care Project LEAD </li></ul></ul></ul><ul><ul><ul><li>Mentoring </li></ul></ul></ul><ul><ul><ul><li>Continuing Education </li></ul></ul></ul><ul><ul><ul><ul><li>LEADgradsOnline, </li></ul></ul></ul></ul><ul><ul><ul><ul><li>LEADcasts, </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Advanced Topics </li></ul></ul></ul></ul>
  10. 10. Center for NBCC Advocacy Training <ul><ul><li>Public Policy Advocacy </li></ul></ul><ul><ul><ul><li>Annual Advocacy Training Conference </li></ul></ul></ul><ul><ul><ul><li>Team Leader Training </li></ul></ul></ul><ul><ul><ul><li>Emerging Leaders Training </li></ul></ul></ul>
  11. 11. The Cochrane Collaboration Now... Seats at Many Tables …
  12. 12. Taking Evidence Seriously – What does that Really Mean? <ul><li>OK with taking unpopular positions on: </li></ul><ul><ul><li>Bone marrow transplant therapy </li></ul></ul><ul><ul><li>HRT therapy </li></ul></ul><ul><ul><li>Mammography guidelines </li></ul></ul><ul><ul><li>Latest technology </li></ul></ul><ul><ul><li>Stopping Clinical Trials early </li></ul></ul><ul><ul><li>Overuse, underuse, misuse </li></ul></ul><ul><ul><li>Guaranteed access to quality care for all </li></ul></ul>
  13. 13. NBCC PRIORITY #5: Ensuring the Participation of Educated Patient Advocates in all Levels of Health Care Decision - Making <ul><li>Criteria for truly representing the patient advocate perspective: </li></ul><ul><li>Must be part of a patient-led, patient-centered organization, responsible and accountable to a patient constituency; </li></ul><ul><li>Must be personally affected by the disease or condition; </li></ul><ul><li>Must be knowledgeable, trained, prepared and confident in ability to participate in the decision - making process of science and medicine. </li></ul>
  14. 14. Being Effective in Advisory Settings <ul><li>High dose chemotherapy with bone marrow transplant </li></ul><ul><ul><li>Doctors and patients pushed for coverage </li></ul></ul><ul><ul><li>NBCC did not – position paper, editorials, nearly lone advocate voice speaking out </li></ul></ul><ul><ul><li>Studies finally proved harms outweighed benefits </li></ul></ul><ul><li>Hormone replacement therapy </li></ul><ul><ul><li>Inadequate evidence, but widespread use </li></ul></ul><ul><ul><li>Women’s Health Initiative – results of RCT: </li></ul></ul><ul><ul><ul><li>combination HRT produces more harms than benefits, including increased risk of breast cancer </li></ul></ul></ul>
  15. 15. Being Effective in Advisory Settings <ul><li>DCIS Controversy </li></ul><ul><ul><li>Treat all as invasive breast cancer? </li></ul></ul><ul><ul><li>Watchful waiting? </li></ul></ul><ul><ul><li>ID those that need treatment </li></ul></ul><ul><ul><li>Need more research </li></ul></ul><ul><li>Avastin ® for metastatic breast cancer </li></ul><ul><ul><li>FDA granted accelerated approval – against ODAC recommendation </li></ul></ul><ul><ul><li>FDA withdrew approval - lack of confirmatory results </li></ul></ul><ul><ul><li>Genentech and some patient groups oppose decision </li></ul></ul><ul><ul><li>NBCC and others testified in favor of FDA decision </li></ul></ul><ul><ul><li>Awaiting decision by Commissioner of FDA </li></ul></ul>
  16. 16. Being Effective in Advisory Settings <ul><li>Mammography Guidelines Controversy </li></ul><ul><ul><li>USPSTF position since 1997 </li></ul></ul><ul><ul><li>Review of the literature, meta analysis, evidence </li></ul></ul><ul><ul><li>Position papers, articles, many media interviews, panel debates </li></ul></ul><ul><ul><li>Educational sessions at: Project LEAD, Advocacy Training Conference, Advanced Topics </li></ul></ul><ul><ul><li>LEADgrads Online </li></ul></ul><ul><ul><li>International forum </li></ul></ul><ul><ul><ul><li>International Project LEAD </li></ul></ul></ul><ul><ul><ul><li>LEADcast </li></ul></ul></ul>
  17. 17. Global Impact: International Graduates of Project LEAD ®
  18. 18. Being Effective in Advisory Settings <ul><li>Important Considerations </li></ul><ul><ul><li>Do your homework – and then some </li></ul></ul><ul><ul><li>Speak the language – be accurate </li></ul></ul><ul><ul><li>Let the mission guide you </li></ul></ul><ul><ul><li>Don’t be distracted by side issues </li></ul></ul><ul><ul><li>Be strategic about using your own personal experience </li></ul></ul><ul><ul><li>Speak on behalf of the community, the issue </li></ul></ul><ul><ul><li>Understand that this is political - have a political strategy </li></ul></ul><ul><ul><li>Go back to the evidence </li></ul></ul><ul><ul><li>Be guided by relevance and translation to patient welfare </li></ul></ul>
  19. 19. Make that Seat Count!