Optimistic, civic and collective: these are the three adjectives that come to Guillemette Jacob’s mind when we ask her to talk about herself. This Parisian with a bright smile and calm voice likes to choose her words. An optimist, she tried to remain so when she was diagnosed with breast cancer twelve years ago. Citizen and collective, certainly. Because at the end of her treatment journey, she co-created the Seintinelles association, which connects researchers and citizens – sick or not. “During one of my consultations at the Institut Curie, Professor Fabien Reyal told me about an American organization (Army of Women, Editor’s note) which brought together volunteers and researchers. They were wasting a lot of time finding volunteers to carry out their studies,” she says. Guillemette, marketing director and experienced in communication, does not hesitate. “I needed to transform the ordeal I was experiencing into a positive perspective,” she confides.
Collaboration and solidarity
Thus was born, ten years ago, the collaborative platform Seintinelles. In a few clicks, volunteers – sick, former patients or not – submit their email address and agree to be contacted by researchers*. No question of therapeutic trials: these surveys mainly consist of answering questionnaires. The themes are diverse: side effects of treatments, doctors’ practices, etc. The community now has more than 38,000 registered members, 73% of whom are non-sick. In ten years, 66 studies have been carried out using these sentinels, or 113,000 individual participations.
“This project gives me back a hundredfold for the time I devote to it,” continues Guillemette, always enthusiastic. It is at the heart of its values: creating links between different worlds. Today, the platform is open to studies on all cancers. The co-founder of Seintinelles, a lover of words, does not however wish to change the name of her platform, which evokes, according to her, “our dual position of watchers and fighters”. A “gentle and a little warlike” word. Just like what she is.
*Emails are for platform purposes only and are not intended for commercial use.