Negotiating Extra Work: A Reflection on Participatory Research Practices in Healthcare

Abstract

This reflection paper examines the often overlooked extra work required to conduct and sustain participatory research in healthcare contexts. Scientific projects require forward planning, methodological flexibility and institutional recognition of the additional effort required to enable sustainable participatory research. Drawing on three healthcare-related case studies, we analyse the tensions between formal project objectives and the realities of conducting research in complex, situated environments. Extra work manifests at multiple levels: (1) within the project scope, (2) at the boundary of the project scope, (3) before the project scope, (4) after the project scope, and (5) outside the project scope. While extra work can serve as a driver of innovation and long-term sustainability, it also creates a fundamental tension for researchers who must balance these emerging demands with project goals, institutional frameworks, and personal capacities. Building on existing concepts from CSCW - such as invisible work and articulation work - we systematically apply and extend these perspectives to the domain of technology development in healthcare. By identifying cross-cutting issues in the case studies, such as stakeholder acquisition and co-benefitting, we refine conceptual understandings of infrastructuring, articulation work and situatedness in participatory research. In doing so, we contribute to grounded design and design case study approaches and reflect on the methodological and practical implications of navigating the inherent tensions of adaptive, long-term engagement in healthcare cooperation.