research advocacy a survivor’s perspective march 10, 2012
TRANSCRIPT
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
• 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.
National Cancer ActDecember 1971
Cure cancer by 1976, the Bicentennial.
“ The War on Cancer”
Richard M. Nixon
Challenges & Opportunities
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
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
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
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
How do we work?
By asking questions from a patient perspective, keeping this awareness of the patient POV front and center.
Are we?
YES!!!
Communication Challenges
A long way from “The Big C,” but
Cancer has its own language
There’s no Rosetta Stone
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…
How a major project comes to be…
The blockade of PD-1 during vaccination against ovarian cancer.
Strib headline
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What is a SPORE?
Specialized Programs
Of Research
Excellence
Translational Research:
•Moving clinical observations to the laboratory
•Moving laboratory discoveries to clinical settings
M.D. Anderson
Fred Hutchinson Center
Mayo Clinic Brigham & Women’s
Fox Chase
Quilts of the Women’s Cancer Program
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
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
Survivor Photo
Minnesota Ovarian Cancer Alliance
2011 Walk/Run