Patient partners of the SIRIC
Maguy Del Rio
« As a researcher (PhD, HDR), I worked for 25 years at the Montpellier Cancer Research Institute (https://ircm.fr/ ). My projects focused on understanding the mechanisms of resistance to treatment and identifying new therapeutic targets in colorectal cancer. My research has always been more translational than fundamental, because my aim was to benefit patients as quickly as possible.
In 2010, I experienced another side of cancer when I was diagnosed with breast cancer and had to undergo chemotherapy, targeted therapy, radiotherapy and hormone therapy. It was then that I discovered the strengths and weaknesses of patient care pathways.
Since then, I’ve wanted to use my experiential knowledge to help, support and teach patients. I trained in therapeutic education and am a double graduate of the Université des Patients, Sorbonne-Université, Paris.
Today, I’m a patient partner in charge of coordinating the patient partnership at the ICM. I’m involved in integrating patient partners into care, but also into research as part of the SIRIC.
I work locally (ICM, SIRIC), regionally (Cancéropole GSO) and nationally (INCA, Unicancer). »
Cyril Sarrauste de Menthière
I have a PhD in biochemistry and chemistry and am a research engineer at the Institut de Génétique Humaine (UMR 9002 CNRS – University of Montpellier). For more than twenty years, my work has focused on computer science. Initially, using drug design, I identified and optimised a peptide to help patients with type 2 diabetes. Later, I became interested in the ‘data’ side of bioinformatics for chronic hereditary auto-inflammatory diseases, such as familial Mediterranean fever (FMF), Crohn’s disease, etc. Since then I have specialised in the creation of databases as tools to aid bioinformatics research, on topics such as germ-line development, the meiotic cell cycle and mitosis in healthy subjects versus malignant cells, epigenetics, pre- and post-natal cytogenetics, etc.
At the same time, my growing interest in communicating (sharing knowledge) with students and the general public has led me to join the board of the CBS2 Doctoral School and the Boards of Directors of several learned societies with genetic connotations.
At the end of 2018, I was stricken by cancer, and followed a course of radio-chemotherapy, surgery, (temporary) stoma placement, adjuvant chemotherapy, and immunotherapy, post continuity, due to the toxic effects of chemotherapy. Discovering the strengths and weaknesses of patient care pathways, I decided to take charge and play an active role in my care, treatment and post-cancer pathways. Surprisingly, I found myself in a knowledge/information desert. In France, in 2019, there are (no longer) any associations for patients affected by colorectal cancer (CRC). So I had to share my search for information and my tips for improving quality of life!
Having heard that the Association Patients en Réseau, with its 3 networks (Breast Cancer, Lung Cancer and Gynaecological Cancer) wanted to create a fourth, I became a member in February 2021.
In March 2021, during Mars Bleu, a month devoted to raising awareness of CRC screening, Mon Réseau Cancer Colorectal (MRCCR) officially came into being. I will take joint responsibility for it in June 2021. At the same time, I’ve been elected to the board of DiCE (Digestive Cancers Europe), a European foundation bringing together digestive cancer patients’ associations from across the EU.
With the aim of running ETP (Therapeutic Patient Education) workshops, I obtained my compulsory and necessary “40h ETP” certification. To give more legitimacy to my actions, in 2022-2023 I enrolled at the Université des Patients de Sorbonne Université (Paris), where I obtained my DU “Patient partner and referent in cancer recovery”.
This course of involvement and training has enabled me to transform my experience into expertise, and to become a referent for patients, both in terms of communication and prevention for the general public. The knowledge I have acquired also enables me to be a driving force in healthcare governance and pharmaceutical companies. I speak up for patients, I fight for health democracy, and I communicate on primary and secondary prevention, at the very least.
Today I’m a patient partner, associated with the Montpellier SIRIC, and I’m involved in creating/revising the ICM’s care pathway for patients with anal canal and colorectal cancers. I also take part in training courses for carers as a witness and patient trainer.
