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Voices of FORCE: Get Off the Sidelines and Help Win the War on HBOC

September 19, 2014

Voices of FORCE: Get Off the Sidelines and Help Win the War on HBOC

by Melanie Nix

I’m participating in the ABOUT Network because it benefits the HBOC community. My mother always encouraged me to get off of the sidelines. Twenty-four years after her death from metastatic breast cancer when HBOC information was in its infancy, I’m still guided by her words.

A few months before my triple-negative breast cancer diagnosis, I learned that I had a BRCA1 gene mutation.

 

My mind swirled with questions, especially about the impact on my young children, who both have a 50% chance of carrying the same mutation. Seeking opportunities to affect change, I applied for membership on the Advisory Panel on Patient Engagement for the Patient-Centered Outcomes Research Institute (PCORI). My appointment allows me to help ensure patient engagement in research. I’ve also applied for the ABOUT Network’s Steering Committee, so that I can actively play a role in the registry’s success.

The ABOUT Network participates in the PCORI national research network known as PCORnet, and represents significant opportunities for progress:

  • Its association with PCORI ensures patient-guided research.
  • It is inclusive, targeting diverse groups that will provide rich data.
  • Patients are essential stakeholders with a critical role throughout the research process.
  • The research can drive greater focus on HBOC.

My children can benefit from research that is being fueled through the ABOUT Network. So can I. It can help them make choices that my mother never had. We will only win the war on cancer if we stay off the sidelines.

Posted in: Research, Voices
Tags: Patient Advocacy, Research Advocacy, Patient Centered Research, ABOUT

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