摘要
This article aims to share an innovative experience of organizing and funding research involving those most directly affected:patients.The“ECLAIR”working group of the Canceropole Lyon Auvergne-Rhone-Alpes(CLARA)was created at the end of 2020 with the goal of contributing to the development of a call for projects on the patient experience in oncology,which was launched in January 2021.Initially composed of 8 members,including 7 patients,coordinated by a project manager from CLARA,the ECLAIR working group actively participated in drafting the specifications of the call for projects,developing the eligibility criteria for applications,revising the evaluation and selection criteria for projects,and monitoring the selected projects.This experience was repeated twice.With significant freedom of action,the working group made two decisions that strongly demonstrate the commitment to supporting research partnerships and the active involvement of those affected:firstly,by making partnership a mandatory requirement for the eligibility of applications,and secondly,by conducting the selection of projects themselves,after an independent scientific evaluation phase.Seeking to shed light on the“black box”of partnership,the article also presents the concrete modalities of interaction among the working group members,the adjustments made between different editions of the call for projects,and the relationships maintained with CLARA.
