2024-10-16 09:47:00
On the occasion of the month of Pink October mobilization against breast cancer, La Veille Acteurs de santé met Catherine Cerisey, entrepreneur, volunteer in numerous associations and teacher of the patient perspective at the University. The one who overcame breast cancer and a relapse in the early 2000s shares her experience and her expertise of a health system that she has sought to improve for 15 years, with all the combativeness and resilience of a woman outside of the common.
Comments collected by Camille Grelle
Where does your commitment come from?
Catherine Cerisey : I was diagnosed with breast cancer in December 2000 followed by a relapse two years later. Declared in total remission in 2009, I opened a blog, “After my breast cancer”to share information about breast cancer which, at the time, did not exist. I kept it going until 2017 before stopping because its reach – 3 million views, 1.5 million unique visitors – became incompatible with my other activities… But that led me to get involved in the industry. associative.
I was in fact approached by a member of the HAS who, interested in my content and my community, invited me to join them as an expert. Subsequently, I was notably vice-president of Cancer Contribution and administrator ofEuropa Donna France andSparkle Île-de-France*.
Beyond your associative involvement, you have put healthy democracy at the heart of your professional life. How did this happen?
C.C : Indeed, after a layoff and a divorce, I co-founded in 2012 Patients & Weba health consulting agency to help healthcare system stakeholders and partners co-construct with patients suffering from chronic illnesses tools (websites, applications, films, podcasts, web radios, booklets, etc.) adapted to their needs and uses. Then, in 2016, I was contacted as part of the opening of an initial teaching program dedicated to general practitioners and delivered by patients. So I became a teacher of the patient perspective at the Sorbonne Paris Nord medical school to general medicine interns.
Finally, in 2021, I co-created Hear Mean e-health start-up. She offers a artificial intelligence algorithm using automatic language processing to analyze feedback from hospitalized patients to enable hospital stakeholders (quality director, department heads, doctors, nurses, etc.) to manage the patient experience over time and, in fineto improve their journeys.
Between your experience and your multiple hats, what observations have you drawn up regarding the journey of patients suffering from chronic illness in general and cancer in particular?
C.C : This type of event disrupts everything in its path and causes collateral damage to family, friends and professionals. In the world of work, this has changed a little in recent years thanks to actors like cancer@work who work a lot on the subject to raise awareness among companies and support employees. But the reality is that there are still women and men who suffer from double penalty of illness-loss of job. And then, we must also be aware that some patients do not necessarily want to return to their old life after treatment. Some want to retrain, change path, help.
There is no right or wrong reaction: it is legitimate in one direction or the other and everything is understood but you have to be able to have a choice. Resilience, for me, is managing to do something with this episode, whether in the field of health as I did or in any other field. In a sense, my blog allowed me to soothe the anger and the feeling of injustice that I felt: I tell myself that I tried to change the health system, to help at my level . This is my definition of resilience but it only concerns me: all reactions are legitimate and acceptable.
In 25 years of involvement, how have you seen the health system evolve?
C.C : What has changed the most in my opinion is undoubtedly care – a term that I much prefer to care: patients are not burdens! In 2002, the Law relating to the rights of patients and the quality of the health system established, among other things, the obligation of information and consent patients, which made it possible to make them much more involved thanks to the shared decision-making process with its phases of information, negotiations and treatment choice.
But this still depends on the health professional you have in front of you. And contrary to what we think, it is not always the youngest who listen the most…
What is your view on the role of social networks in this evolution of the health system?
C.C. : Social networks have obviously changed the situation: patients talk to each other, exchange information and those who did not know about patient associations now have access to patients « experts ». Associations communicate and can reach a wider audience via these channels. The information available is more reliable and false information remains accessible for a short time before being denied.
And all this is very beneficial: patients are less prey to bad advisors. Finally, there is a certain self-regulation by collective intelligence.
What remains to be done to improve health democracy in your opinion?
C.C. : The biggest revolution underway is taking into account the voices of patients, individually and collectively, and I am convinced that teaching health professionals by patients will move things even further forward. But if democracy in health is effective, it is not yet automatic or fully accepted. Just look at what happened in the media during Covid: not a single patient representative was invited to the debates which were nevertheless legion! This is proof that things are changing but there is still work to be done.
And on the side of care?
C.C. : We need to work on a even more comprehensive care and including, in addition to treatment stakeholders, those in supportive care, associations, institutional stakeholders such as INCa, HAS, etc. We also need to work on the digital deserts because they are also the medical deserts. However, the people who do not have access to information are those who need it the most. Patients are blamed for going to the emergency room but it’s because they have no other choice!
In my opinion, we are committing a fundamental error by not focusing on the primary care medicine. We must move away from the dominant hospital-centric vision in favor of a local policy which relies in particular on doctors on call. Health homes and CPTS are the beginnings of a solution but we must go even further.
*Cancer Contribution is a collaborative platform committed to health democracy:
Europa Donna France is the French branch of a European coalition providing information and support for women with breast cancer:
Étincelle is an association that offers supportive care to patients:
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