Participatory Governance of Healthcare: Centring Dialogue and Interrupting Epistemic Injustice

Traditionally governance is set up to stabilise and control and hold organisations accountable for their actions. Experts, decision-making and privileged citizens close to the centres of power and strategic decision-making determine those processes. Hence, many voices and perspectives are silenced, resulting in mismatches between policies and people’s needs. We propose a participatory approach to governance in the field of healthcare where people in vulnerable and marginalised positions are involved through a relational process to influence policies, with the goal of social justice and social change. This requires a communicative space for mutual learning, listening, questioning, and dialogue. In practice, we find that precisely the experiential and pathic knowledge of people in the margins often produces a breakthrough in making contact with policymakers and professionals and interrupts processes of silencing and epistemic injustice. For example, a creative expression in a performance or exhibition leads to a call to action. In our article, we illustrate our approach with a few cases from our practice of an eight-year-long collaboration with people in vulnerable positions, artists, researchers, managers, and policymakers to make a change towards social inclusion in a large city in the Netherlands.

Barbara Groot

Barbara Groot is senior researcher who conducted her Ph.D. in ‘Ethics of Participatory Health Research’. She co-founded an eight-year-long collaboration called ‘Centre of Client Experiences’ which was focused on policy change with people in vulnerable situations.

Tineke Abma

Professor for Participation at the Leiden University Medical Centre, and Executive-Director of the Leyden Academy on Vitality and Ageing

Tineke Abma is a professor for Participation at the Leiden University Medical centre, and Executive-Director of the Leyden Academy on Vitality and Ageing.