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Research Advocacy A Survivor’s Perspective

Research Advocacy A Survivor’s Perspective. March 10, 2012. MOCA serves. Over 800 ovarian cancer survivors More than 4,500 members Over 45,000 friends, family and donors. Medical Research.

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Research Advocacy A Survivor’s Perspective

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  1. Research Advocacy A Survivor’s Perspective March 10, 2012

  2. MOCA serves • Over 800 ovarian cancer survivors • More than 4,500 members • Over 45,000 friends, family and donors

  3. Medical Research • MOCA is one of the top five private non-profit funders of ovarian cancer research in the country. • In 2012,MOCA will have exceeded $3 million in research grant awards.

  4. National Cancer ActDecember 1971 “ The War on Cancer” Cure cancer by 1976, the Bicentennial. Richard M. Nixon

  5. Challenges & Opportunities

  6. Who can be a research advocate? Someone who conveys a collective patient perspective Someone who brings a consumer POV to the research process Someone who wants to help research progress

  7. Possible Research Advocate Roles • Review and evaluate grant proposals • Serve on Institutional Review Boards • Research project engagement. Can be long term. e.g. SPORE projects • Participate in research training for advocates

  8. Research advocate role & expectations • To represent the ovarian cancer community. • To utilize life skills and experiences, harboring no conflicts of interest. • To understand that our role is not fundraising, watchdog advocacy, or direct patient support.

  9. Additionally… Willingness to read and study • To self-educate on • science • research concepts • terminology Ability to communicate clearly • To function as a team with researchers, focused on a • common mission

  10. How do we work? By asking questions from a patient perspective, keeping this awareness of the patient POV front and center.

  11. Are we? YES!!!

  12. Communication Challenges A long way from “The Big C,” but Cancer has its own language There’s no Rosetta Stone

  13. Wit By Margaret Edson Cynthia Nixon in Wit The New Yorker, Feb 6, 2012 Photograph by Ruven Alexander

  14. Research Grant Program So… you think you want to be a grant reviewer? Here’s how this program works…..

  15. As an example…

  16. How a major project comes to be…

  17. The blockade of PD-1 during vaccination against ovarian cancer.

  18. Strib headline

  19. What is a SPORE?

  20. SpecializedPrograms Of Research Excellence • Translational Research: • Moving clinical observations to the laboratory • Moving laboratory discoveries to clinical settings

  21. Fred Hutchinson Center Mayo Clinic Brigham & Women’s Fox Chase M.D. Anderson

  22. Quilts of the Women’s Cancer Program

  23. Mayo Ovarian SPORE Research Advocate Program One advocate is engaged with each SPORE project • PARP Inhibitor with topotecan • Mechanisms of Immune Suppression • Measles Virus • PARP Inhibitor with Floxuridine

  24. Skills & Characteristics for SPORE Research Advocates • Desire to learn • Interest in science and research • Listening skills • Communication skills • Collaborative skills • Ability to be part of a team • No personal agenda • Assertiveness

  25. How to get started • Educate yourself on current research happening nationwide. • Know where research happens in your community. • Let OCNA know that you are interested.

  26. The Reward

  27. Survivor Photo Minnesota Ovarian Cancer Alliance 2011 Walk/Run

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