Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives

Abstract

OBJECTIVE To gain more insight into exclusion mechanisms and inclusion strategies in patient-expert partnerships. BACKGROUND Patient participation in health research, on the level of 'partnerships with experts' is a growing phenomenon. However, little research is conducted whether exclusion mechanisms take place and to what extent patients' perspectives are included in the final outcomes of these partnerships. Case study A dialogue meeting attended by experts, patients and patient representatives to develop a joint research agenda. Different inclusion strategies were applied during the dialogue meeting to avoid possible exclusion. METHOD Data were collected by the means of audio and video recordings, observations, document analysis and evaluative interviews. The data are clustered using a framework that divides exclusion mechanisms in three categories: circumstances, behaviour and verbal communication. The data are analysed focusing on the experiences of participants, observation of occurrence of exclusion and difference between input and outcome of the dialogue meeting. RESULTS The circumstances of the dialogue and the behaviour of the participants were experienced as mainly inclusive. Some exclusion was observed particularly with respect to verbal communication. The input of the patients was less visible in the outcome of the dialogue meeting compared to the input of the experts. CONCLUSION This case study reveals that exclusion of patients' perspective occurred during a dialogue meeting with experts, despite the fact that inclusion strategies were used and patients experienced the dialogue meeting as inclusive. To realize a more effective patient-expert partnership, more attention should be paid to the application of some additional inclusion strategies.