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Background : For over 20 years and despite the development of new social networks, health forums have remained a privileged place for patients to exchange around health issues. This study researches the participants’ motivations to post a message in an online French Health Forum (called ‘Doctissimo’).Method : Between 1st January 2017 and 31st December 2019, the first posts were recorded on the ‘Doctissimo’ health forum, in their initial format by a crawler. The transcripts were imported in the qualitative analysis software Nvivo. Two researchers codified the data until a theoretical saturation was obtained. Results : Four categories of motivations were identified : 1) 'Requesting' allows the exchange of mainly medical information, or a feedback on experiences with the disease : 44 .81%, 1722 codes ; 2) ‘Worrying, need for reassurance’ : 27.74%, 1066 codes; 3) ‘Self-expressing’ mainly enables catharsis leading to emotional liberation : 19.88%, 764 codes; 4) Community spirit is a central element to create an emotional support group : 7.57%, 291 codes. The relationship and the obstacles to a medical consultation are described. When mentioned, the relationship with a healthcare professional is generally marked by doubts, confusion, or a lack of information.Conclusion : Patients log in to confront a community, they feel free and legitimate. Resorting to the information offered by the Internet is a way of reassuring themselves or of being confirmed in their own hypothesis/ provided by a health professional. Patients are looking for an immediate response.

IntroductionSince 2013, the coverage of innovative and expensive drugs by the French National Health Insurance considers cost-effectiveness and budget impact, as assessed by the National Authority for Health (HAS) on the basis of an evaluation submitted by the firm. First CAR-T cell therapies were subject to economic evaluation in 2019 in France. We aim at describing the process and results of the economic evaluation of tisagenlecleucel and axicabtagene ciloleucel and the challenges these evaluations raised.MethodsPrimary evaluations were submitted by the firms to be reviewed by HAS. The final analyses were submitted to the Committee of Economic Evaluation and Public Health (CEESP), composed of independent economists, clinicians and patients’ representatives. The CEESP issued Opinions related to i) the methodological quality of economic evidence and ii) the cost-effectiveness and budget impact of the drugs under review.ResultsThe estimated incremental cost-utility ratio (ICUR) of tisagenlecleucel were rejected, being based on insufficient clinical evidence to estimate and extrapolate the long-term progression and to compare tisagenlecleucel with alternatives. Thus, the CEESP concluded that tisagenlecleucel was not proved cost-effective. The estimated ICUR of axicabtagene ciloleucel at 114,509EUR/QALY vs. chemotherapies was associated with an acceptable level of evidence despite being based on a frail indirect comparison and limited data on quality of life. In a context where France has no official cost-effectiveness threshold, the CEESP considered axicabtagene ciloleucel ICUR to be “very high” and questioned the collective acceptability of the claimed price.The CEESP stressed that the main source of uncertainty surrounding the ICUR estimates of both drugs was related to the lack of hindsight on effectiveness, especially in terms of overall survival and safety.ConclusionsThe economic evaluation of CAR-T cell therapies highlights the sources of uncertainty underlying the decision and the risk of inefficient resource allocation driven by limited clinical data. It calls for payment schemes accounting for the uncertainty, and effective collection of relevant post-marketing data.