Information is one of the most important needs of cancer patients. Their strong, variable and heterogeneous expectations, in terms of information on different aspects of the management of the disease, raise the question of the quality of the information made available to patients. The development of good-quality information materials and decision aids, dedicated to clinicians, such as clinical practice guidelines (CPG), or dedicated to patients, such as patient information leaflets, requires taking into account the three essential components of medical decision: current scientific data (evidence-based medicine), professional expertise and patient values and preferences. To be able to base medical decisions on these three dimensions, the challenge is to share with the patients current scientific data, and incorporate patient preferences in the development process of CPG. Our hypothesis is that it is possible to integrate the preferences of patients at two levels of knowledge production: the development of written patient information in the French SOR SAVOIR Patient program on the one hand, and development of CPG for clinicians on the other hand. The results of this work provide a methodological contribution to improve the quality of written documents and involve cancer patients in the development of this information.
Quality of cancer patient information and integration of patient knowledge : from theory to practice : about the SOR SAVOIR Patient program of the French Federation of Comprehensive Cancer Centre