Enhancing patients' autonomy by involving them in research ethics committees

Objective : Although clinical trial participants are the most affected by research ethics committee’s decisions, they are not formally represented on Swiss committees. We aimed to find out what patients think about the idea of being members of such committees. Design : Latent thematic analysis was used to analyse the interviews. Setting: Patients were recruited in a Swiss university hospital. Participants: The study involved 26 patients suffering from diabetes or gout. Interventions: We conducted semi-structured interviews. Main Outcome Measures: We explored what patients think of being established members of research ethics committees. Results : We identified three different attitudes among our participants regarding participation in research ethics committees: 1) positive attitude regarding the idea of being members of such committees 2) ambivalent attitude and 3) negative attitude. Patients belonging to the first group 1) often mentioned that they wanted their health condition to be more visible. Patients from the second group 2) mentioned positive as well as negative aspects. Patients from the third group 3) said that patients in general did not have enough background knowledge to be able to gain an overview of a whole clinical trial. Conclusions: Our study adds important knowledge about the idea of patients becoming research ethics committee members by exploring their perceptions of being members. Stable patients tended to be interested in the idea of participation and some specific recommendations could be derived (patients could have an advisory instead of a decision-making role on committees). However, further studies with more patients and further quantitative research are needed.

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