This video presents one of the main projects of SIRIC CARPEM, which aims to implement dynamic consent by evaluating the acceptance of such consent among patients and healthcare professionals. This consent will be based on a digital interface that allows patients to adjust their consent over time as new knowledge is acquired and may lead to the reinterpretation of results and/or the reuse of samples.
We have chosen to work with patients by inviting them to register on the Nutrinet Santé platform in order to test dynamic consent in “real life”. Subsequently, this will allow us to assess the acceptability among patients and institutions of linking Nutrinet Santé data with hospital clinical data through the dynamic consent digital platform. This platform could become an invaluable source of information.
Presentation of the CARPEM Program 3
https://carpem.fr/programmes/programme-3/
Home page of the CARPEM website:
https://carpem.fr/
Nutrinet Santé Study Website:
https://etude-nutrinet-sante.fr/
Modern cancer research relies on translational research, a continuous exchange between three key players: the patient, the researcher, and the clinician.
Fluid data communication between these three parties is essential to the success of this approach.
Technical advancements support this effort. The development of big data, AI, and biobanks allows patient data to be exploited in large quantities, over the long term, and across a wide variety of sources, which greatly expands research possibilities.
However, all these exchanges are subject to patient consent, the formal agreement allowing the use of their current and past data for a specified period.
In its current form, consent is rigid, making it difficult to reuse past data while ensuring informed communication with the patient. This rigidity hampers progress.
This is why CARPEM is committed to outline a dynamic consent framework that will establish two-way communication between patients and researchers. It will be based on a digital interface that allows patients to update their consent over time as new insights are gained, potentially leading to reinterpretation of results and/or reuse of samples. Through field studies (questionnaires), CARPEM is testing the feasibility and acceptance of building a dynamic consent platform among patients and professionals.
We have initially chosen to work with patients with Lynch syndrome (and subsequently with patients with solid tumors) and invited them to register on the Nutrinet Santé platform in parallel in order to test dynamic consent ‘in real life’.
Nutrinet Santé allows volunteers to regularly enter a large amount of informations about their health and diet on a website.
Linking Nutrinet Santé data with hospital clinical data via the dynamic consent digital platform would become an invaluable resource. This will enable CARPEM to study barriers to consent and, ultimately, validate the acceptability of data linkage both by patients and institutions.
In this way, CARPEM contributes to the development of ethical practices that align with the demands of modern cancer research