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Research Advocate 

What is Research Advocacy?

When breast cancer advocates began demanding attention in the early 1990’s, it was initially to have more funds allocated to breast cancer research. Later it became imperative to have a place at the table as it was decided how those funds would be spent. Advocates in research bring the patient perspective and the patient’s voice, to every level of breast cancer research, from the questions that are asked in research to the way people who participate are protected from risk and how results are provided.

Is there a need for Research Advocates?

The Susan G. Komen for the Cure St. Louis Affiliate recognized a significant need for Breast Cancer Research Advocates in the St. Louis area and for many national and regional research funding agencies. Local medical institutions that conduct clinical trials need non-scientific members to serve on their Institutional Review Boards (IRB’s). Komen’s national organization, the National Cancer Institute and the Department of Defense all need trained advocate reviewers for their research grant programs. There are opportunities to serve within Cooperative Groups of the NCI as they develop clinical trials.

What qualities should Research Advocates have?

• Being a Breast Cancer Survivor, Co-Survivor, or Activist
• A passionate belief in the necessity of scientific research
• Capable of reading and writing English and willing to do the required homework
• Able to communicate clearly and calmly and articulate her/his point of view
• Can separate facts and science from his/her own experience
• Have time and be willing to use vacation (or have a flexible enough schedule) to attend meetings
• Willing to ask questions and really listen to and evaluate the answers
• NOTE: a science background is NOT necessary

How can I learn more?

The Komen St. Louis Affiliate and the Research Advocacy Network have developed the Research Advocate Workshop. This program will identify potential Research Advocates, help them understand the role of advocates in the research process, present research advocacy opportunities, explain the levels of commitment required to be a Research Advocate and identify the resources available to develop the necessary portfolio of skills and knowledge. 

For information regarding the next workshop, please contact the Affiliate’s Education Committee at 314-569-3900 or researchadvocacy@komenstlouis.org.