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The Voice of People With Breast Cancer


Our Voices Blog

“Nothing about us, without us”- Key lessons learnt from the Breast Cancer Patient Group Forum

How valuable is patient input to decision-makers and how can we work to make sure that the patient voice is really being heard? These are just some of the important questions that I and many others gathered to discuss at the annual Breast Cancer Patient Group Forum in Vienna, Austria.

From June 27-28, I was fortunate enough to join delegates from breast cancer organizations in Europe, the United States and Brazil to share information, exchange ideas and discuss how patient groups like CBCN, can be more meaningfully engaged in decision-making on health.

The conversations we had, touched on everything from clinical trial designs to earlier detection of breast cancer to the patient experience within the healthcare system, but the central theme throughout our discussions was the concept that it’s not enough for patients to just be at the table but instead wield the power to make and influence decisions. This vision was really crystallized for me by a fellow advocate who shared that her vision for breast cancer activism came from the HIV/AIDS patient community who coined the phrase “nothing about us, without us” to transform conversations about their disease.

The spirited discussions at the meeting caused me to really reflect on CBCN’s own unique approach to breast cancer. Whether we are providing feedback to decision-makers, developing educational resources or coordinating campaigns, breast cancer patients are at the forefront of everything we do. Our patient-directed board model really sets this tone for our organization and this perspective informs all of our work.

My time at the Breast Cancer Patient Group Forum only served to reinforce this viewpoint. It was so striking to see that no matter which country or continent we represented, all of us shared the same vision- that patients are the true experts on their disease and deserve to be involved in any decision-making that impacts their care.