Short Abstract

The field of patient and public involvement (PPI) is confronted with challenges such as tokenistic inclusion and tensions between standardization and context-sensitivity. The panel seeks to open a dialogue on the possible futures for PPI and explore how STS can help shape them.

Description

Over past decades, patient and public involvement (PPI) has become a defining feature of health research. It is now embedded in funding requirements, institutional frameworks and ethical discourses that emphasize knowledge co-production and inclusion. Yet despite this institutionalization and methodological innovation, persistent challenges remain: e.g. tokenistic involvement, epistemic injustices reinforced through professionalisation of patient representatives, tensions between standardization and context-sensitivity, and the difficulty of sustaining meaningful involvement within increasingly managerial and neoliberal research environments.

A central theme running through these debates is the inclusion challenge. Efforts to promote inclusion are guided by commitments to justice and representativeness. Yet, as STS scholars have shown, such efforts can reproduce exclusionary logics by reifying categories of the underserved. Inclusion strategies often reaffirm assumptions about who is recognized as a legitimate participant and whose knowledge is valued. This challenge raises the question of how PPI futures might be imagined differently — beyond inclusion as representation towards more relational, context-specific, and reflexive involvement forms.

This call for reflexivity and contextual sensitivity leads to a second theme: the tension between standardized frameworks and reflexivity in local contexts. The proliferation of checklists and guiding principles aims to ensure legitimacy and coherence but may obscure locally embedded values and everyday negotiations that give involvement meaning in practice. Standardized tools also encode specific versions of PPI, masking them behind claims of neutrality or efficiency, generating frictions between competing versions of PPI. With growing involvement of commercial actors such as pharmaceutical companies in defining PPI through standardization, we see how those powerful enough to set standards can marginalize more relational and reflexive approaches. How might critical scholars sustain spaces for reflection and co-learning within these contexts?

Through these interconnected themes, the panel seeks to open a dialogue on the possible futures for PPI and explore how STS can help shape them.

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