The pilot project "With us. About us." aims to bring participatory research itself into focus by looking at experiences with and effects of participation. In doing so, it wants to better understand how different forms of participation change the research process itself and also its results, the (digital) representation of personal experiences of illness.
The starting point for this is the DIPEx project ("Database of Individual Patients' Experiences") Switzerland, founded in 2017. The DIPEx approach was developed in Oxford in 2001 as a pioneering project of direct patient participation by placing ill people at the center of research as experts in their cause. Their stories are recorded through narrative interviews and qualitatively analyzed to give their illness narrations a public voice via the DIPEx website (www.dipexinternational.org). However, international participation research and the possibilities of participation, as well as user habits, have changed considerably due to digitalization (Web 2.0/social media).
Our pilot project takes up these different ends as well as digital changes and possibilities and now explores the question of whether and how the participatory potential of the previous research and presentation process of DIPEx can be expanded by a higher degree of participation of those affected. In successive workshops, we will reflect on the experiences with the research and representation process of disease narratives so far. We will try to expand the participants' participation possibilities through experiential co-creation to better understand how participation can be rethought with and through the involvement of the target group and how the results can be used for the (digital) representation and communication of disease narratives.
With this meta-perspective on participation, we aim to illuminate a gap in the dialogue between researchers, citizens and design experts.