Inquiries into experience and the multiple politics of knowledge. 4S conférence, Barcelona 2016
Has patient experience or patient experiential knowledge the potential to constitute other means of doing science and technology? Does it represent an alternative to mainstream science? Has it the power to question it, to challenge it, to make it more “democratic”? To try to answer this question, I contrast two sets of configurations: the first one concerns patient groups and I will try to recap what we have learnt from what they do with experience; the second one is centred around activities of private actors as well as researchers or institutions who have decided to give patient experience an important role in research, promoting the notion of “patient centred care”, the involvement and the participation of concerned people to research and research drawing on what is called “patients’ reported outcomes”.
In this presentation, I describe the different ways in which people’s experience is enacted, how it is mobilized in knowledge production, and I reflect on the kind of politics it performs, and on the extent to which it could be considered as science by other means.