Comité de patients
It will set up a committee of patients and patients association involved in cancer research to promote understanding between participants to research and researchers about the goal and practices of research in oncology. It will provide a forum for interface between patients involved in research and research professionals with the support of qualified people that will facilitate the establishment of harmonious relations. Its purpose is to consolidate the intelligibility of the course of patients involved in translational research in oncology.
The constitution of this committee has three objectives. It will be the place of gathering feedback from participants in research. It will transmit to CARPEM steering committee an annual report on the experiences and perceptions of patients involved in research in terms of patients' rights, dysfunctions, grievances and it will make proposals to improve relations between research actors. It will support the validation of satisfaction surveys carried out in the framework of CARPEM program. Studies can be performed in it at the request of the committee of ethics and assessment practices in translational cancer research in order to explore a number of assumptions or requests. It will be an institution of vigilance on the elements experienced by patients participating in research.
The committee of patients will be an interface between the patients associations, which are important actors in the social representation of cancer pathology, and researchers. Matters such as this ascription of new rights in the practices for patients participating in cancer research will be contacted in this committee. Therefore, this committee will be the expression of the cancer research representative democracy with and for patients included in CARPEM program.
The committee of patients will include cancer patients, association of patients as well as individuals with recognized expertise in research. It will meet monthly. The committee is composed of 6 patients participating to CARPEM research program, 2 representatives of the CISS association, 1 one representative the Ligue Nationale de Lutte contre le Cancer, 1 representative of the French HNPCC association (Hereditary Non-Polyposis Colorectal Cancer) and 6 members with recognized expertise in research namely Christian Hervé responsible for laboratory of Ethics / Forensic medicine, Eric Martinent (jurist), Nicole Pelicier (oncopsychatrist), Jean-Pierre Thierry (public health phycisian), Dominique Demarchelier (linguist), Anita Burgun (bio-informatics researcher) and Philippe Jaury (public health).