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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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slide1

Research Advocacy

A Survivor’s Perspective

March 10, 2012

moca serves
MOCA serves
  • Over 800 ovarian cancer survivors
  • More than 4,500 members
  • Over 45,000 friends, family and donors
medical research
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 act december 1971
National Cancer ActDecember 1971

“ The War on Cancer”

Cure cancer by 1976, the Bicentennial.

Richard M. Nixon

who can be a research advocate
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

possible research advocate roles
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
research advocate role expectations
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.
additionally
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
slide13

How do we work?

By asking questions from a patient perspective, keeping this awareness of the patient POV front and center.

slide14

Are we?

YES!!!

slide15

Communication Challenges

A long way from “The Big C,”

but

Cancer has its own language

There’s no Rosetta Stone

slide16

Wit

By Margaret Edson

Cynthia Nixon in Wit

The New Yorker, Feb 6, 2012

Photograph by Ruven Alexander

research grant program
Research Grant Program

So… you think you want to be a grant reviewer?

Here’s how this program works…..

s pecialized p rograms o f r esearch e xcellence
SpecializedPrograms Of Research Excellence
  • Translational Research:
  • Moving clinical observations to the laboratory
  • Moving laboratory discoveries to clinical settings
slide26

Fred Hutchinson Center

Mayo Clinic

Brigham & Women’s

Fox Chase

M.D. Anderson

mayo ovarian spore research advocate 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
skills characteristics for spore research advocates
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
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.
survivor photo minnesota ovarian cancer alliance 2011 walk run
Survivor Photo

Minnesota Ovarian Cancer Alliance

2011 Walk/Run