“I can hear you, but I’m not listening!”. This famous quote from Dr. Duisenberg, former president of the European Central Bank, was directed at politicians. It is also what patients constantly hear or experience when they try to set up cooperation with all stakeholders of the medical industrial complex: patient organizations, researchers, physicians, industry, government. They can all hear, yet they don’t listen. Why?

There are several reasons why they don’t listen. The stakeholders simply are not aware that patients could have a voice; they have an interest in not listening (ego, money); they think advocates are not able to communicate at their level and don’t realize that they can simplify their language to one that patients understand. No matter what: they don’t listen and that hurts patients, healthcare and society.

Ever considered that patients are the experts on their own bodies? They feel it 24/7, while doctors hear and see them for 10 minutes at most. One can speed up the process by listening to the patient. It benefits patients, healthcare (costs, personnel, satisfaction), and society (same). Listening and cooperating with patients is essential in healthcare, therefore the patient should be placed at the centre. It never was.

A Patient Advocate embodies dedication and inspiration, possessing a remarkable ability to champion advancements in cancer prevention, diagnostics, treatments, and aftercare. Through collaboration and mutual support, these advocates amplify their impact. Patient Advocates are informed and articulate, actively engaging in discussions and insisting on their involvement in decision-making processes that affect them. While medical professionals and policymakers bring invaluable expertise to the table, patients and their advocates bring a perspective grounded in personal experience that is unparalleled in its depth and relevance. This unique insight grants them not only the right but also the profound qualification to contribute significantly to healthcare policies and decisions. True innovation in research and treatment necessitates partnership with those who live the experience – patients and their advocates.

Patient Advocates: Don’t content yourself with being heard – make your stakeholders truly listen!