Using Patient Knowledge in Patient Participation: Can a capabilities approach provide an equitable design for patient participation and avoid epistemic injustice?

Abstract

This thesis provides an epistemological and ethical analysis of the use of the concepts ‘experience’, ‘experiential knowledge’ and ‘experiential expertise’ within patient participation in The Netherlands. It shows how the use of these concepts can provoke epistemic injustice being done to patients by creating hierarchies of epistemic positions and by exclusion of marginalised groups. It is argued that instead of experiential knowledge, we should start using the term ‘patient knowledge’. In order to do this it is examined whether a capabilities approach could be a suitable theoretical framework to involve patient knowledge into care in a morally just way. Therefore, three arguments in favour of– and against– a capabilities approach are introduced, exploring if it can provide an equitable design for reshaping patient participation policies within The Netherlands. It was concluded that an essentialist capabilities approach can provide an equitable framework for patient participation on an institutional (macro) level. At an individual (micro) level, it can provide a starting point for the conversation between physicians and patients, but leaves the freedom to interpret the framework to the patient and the physician. The task of the physicians is to create the space for good communication, by, for instance, using tools as a prelude for the conversation or by the acquisition of both moral and epistemic virtues.