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Paper short abstract

Based on interviews and observations, we explored the institutional work conducted by actors working to improve the inclusion of experts by experience and address epistemic injustice in decision-making processes in (mental) health care.

Paper long abstract

The involvement of experts by experience in decision-making processes can be helpful for developing person-centered approaches to (mental) health care (Petit-Steeghs, 2019). Integrating experiential knowledge in these processes has, however, proven difficult. Experts by experience face both the undervaluing of their knowledge and of themselves, as ‘knowers’ (Fricker, 2007; van Os et al., 2021). To overcome this undervaluing demands institutional support (Scholz et al., 2019). However, little is known about the institutional work that goes into making space for the involvement of experts by experience. Therefore, we investigated how actors work to address epistemic injustice in decision-making processes.

In our contribution, we explore institutional work done to increase the participation of experts by experience in regional projects aimed at improving support for people with misunderstood behavior in the Netherlands. ‘Misunderstood behavior’ is a term used to describe the people that Dutch police register as ‘disruption by confused person’ (Petit-Steeghs et al., 2021). We observed project meetings with and about experts by experience (n=24) and interviewed (n=17) both experts by experience and other actors involved in the regional projects.

Preliminary findings identified different types of institutional work. Using van der Heijden et al.’s framework (2025), we were able to identify relational, conceptual, structural and operational work, which happen simultaneously and affect each other. For example, actors work to establish new belief systems and norms through challenging their colleagues’ tokenistic assumptions about inclusion. This institutional work helps to address epistemic injustice and improve the inclusion of experiential knowledge in decision-making processes.