Scroll Top

IMPLEMENTING A PATIENT AND RELATIVES ENGAGEMENT PROGRAM TO PROMOTE PATIENT EMPOWERMENT IN TRANSLATIONAL RESEARCH

COORDONATORS
female-silhouette-768x614
Marie-France Mamzer, MD, PhD
female-silhouette-768x614
Mathilde Touvier, PhD

This program aims to strengthen the involvement of patients and their families in the translational research conducted by SIRIC CARPEM. The partnership between patients, family caregivers, doctors and researchers will be encouraged by the creation of a working group bringing them together. This group will have a consultative role (ethical issues, health democracy, etc.) and an operational role (facilitating patient adherence to C-MOT) on research projects. A participatory research program will be developed around tools for measuring the experience and results reported by patients (PREM/PROM) in nutrition, on their care pathway and on their participation in research projects.

In the field of translational medicine, new practices, although innovative and promising, can be rejected by patients and the general public if they are not properly understood. Partnership between patients and healthcare professionals is therefore essential to improve understanding of translational medicine practices and develop a common language, an effective means of disseminating new knowledge to the general public.

The CARPEM 3 program offers a unique opportunity to further our collective goal of developing health democracy and the involvement of patients, their families and the general public in translational cancer research, by providing the material conditions for implementing this essential partnership.

This research program is divided into 2 workpackages.

WP8 “Implementation and structuring of the CARPEM3 Co-T-REx group as an advisory committee and facilitating executive group”. This workpackage aims to set up a joint group that will function not only as an advisory committee for the CARPEM3 research program, but will also have executive missions. It will be involved in promoting patient participation in the C-MOT described in IRP2. In addition, this group will be the executive coordinator of a patient-centered collaborative research program, and will pursue an ambitious agenda of knowledge dissemination through communication actions.

WP9 “Measuring patient experiences and outcomes in translational cancer research and care pathways”. This workpackage aims to promote the routine use of PROMs in cancer clinical settings, as well as to co-construct with patients and validate new PROM or PREM tools. The systematic use of these patient-reported measurement tools empowers patients and their relatives, improves monitoring of patients’ symptoms, and enables healthcare professionals to understand patients’ needs.