Research Advocacy A Survivor’s Perspective March 10, 2012.
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Transcript of Research Advocacy A Survivor’s Perspective March 10, 2012.
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Research Advocacy A Survivor’s Perspective
March 10, 2012
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MOCA serves
• Over 800 ovarian cancer survivors
• More than 4,500 members
• Over 45,000 friends, family and donors
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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.
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National Cancer ActDecember 1971
Cure cancer by 1976, the Bicentennial.
“ The War on Cancer”
Richard M. Nixon
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Challenges & Opportunities
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Who can be a research advocate?
Someone who wants to help research progress
Someone who conveys a collective patient perspective
Someone who brings a consumer POV to the research process
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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
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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.
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Research advocate role & expectations
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Additionally…
Willingness to read and study
Ability to communicate clearly
To self-educate on science research concepts terminology
To function as a team with researchers, focused on a
common mission
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How do we work?
By asking questions from a patient perspective, keeping this awareness of the patient POV front and center.
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Are we?
YES!!!
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Communication Challenges
A long way from “The Big C,” but
Cancer has its own language
There’s no Rosetta Stone
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WitBy Margaret Edson
Cynthia Nixon in WitThe New Yorker, Feb 6, 2012
Photograph by Ruven Alexander
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So… you think you want to be a grant reviewer?
Here’s how this program works…..
Research Grant Program
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As an example…
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How a major project comes to be…
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The blockade of PD-1 during vaccination against ovarian cancer.
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Strib headline
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What is a SPORE?
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Specialized Programs
Of Research
Excellence
Translational Research:
•Moving clinical observations to the laboratory
•Moving laboratory discoveries to clinical settings
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M.D. Anderson
Fred Hutchinson Center
Mayo Clinic Brigham & Women’s
Fox Chase
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Quilts of the Women’s Cancer Program
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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
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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
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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.
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The Reward
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Survivor Photo
Minnesota Ovarian Cancer Alliance
2011 Walk/Run