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.

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.

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.