”I always use the phrase ‘jamais rien sur nous sans nous’ [nothing about us without us]. Healthcare is one of the few fields where we still do things ‘for’ and not ‘with’ people. I’m a strong advocate of shared decision-making between patients and doctors, and have campaigned for us to move away from the paternalistic tradition of healthcare, where a doctor says: ‘I, the expert, say that you, the patient, must have such and such a treatment.’ As an individual, I have my own values, preferences, fears, and lifestyle. We need to develop treatment pathways that can factor these things in.
“I was diagnosed in 2000 and went into complete remission in 2009, which is when my public role as a ‘patiente engagée’ [committed patient] began. It started with a blog called ‘Après mon cancer du sein’ [After my breast cancer], which I wrote to share my experience with other women so that they could be more informed and get the best help possible. This was picked up in the mainstream media and led to a whole range of other activities. My roles now include teaching the patient perspective to medical interns at Sorbonne Paris Nord (Paris XIII) and advising groups such as the CNGE (Collège National des Généralistes Enseignants), a committee of general practitioners here in France. A year ago, I cofounded the start-up EntendsMoi, which leverages artificial intelligence to better represent the verbatim feedback of patients. I also cofounded the agency Patients & Web around a decade ago, to provide co-built healthcare solutions with patients.
“I’ve always been forward looking when it comes to technology. I was one of the first of my friends to get excited about the internet and I’ve always had the latest phone. The same goes for AI. As long as it remains a tool in the control of human experts, then it can be extraordinary.
"Healthcare is fundamentally about humans though, so as long as AI can be used to support experts, free up their time, and create more reliable patient care, then I am not afraid.”
“I can’t really explain what has made me such a strong patient advocate; I suppose I’ve always had a militant side! Before my diagnosis I worked in the art world, and as a manager I definitely fought for my team against the hierarchy. While I don’t really miss working in that industry, I still love art and attend lots of exhibitions. One of my most treasured possessions is a painting that was given to me by my father. If you look closely, you’ll notice that the woman at the center has asymmetrical breasts, which I find quite astonishing given my own history.”
As told to Florent Tribalat. This conversation has been translated from French.