No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement

Public and Patient Involvement and Engagement (PPIE) enhances the inclusivity, relevance and responsiveness of health research for communities. Although public and patient involvement is grounded in lived experience and typically falls outside formal ethical review, ethical considerations nonetheless arise. This paper therefore examines PPIE concepts and practices through an EoC lens.

Through a thematic, iterative review of the literature, this paper examines PPIE practices, analysing these by drawing on feminist scholarship, notably the EoC perspective and intersectionality, to explore how lived experience is constructed within health research.

The EoC perspective can play an important guide for help researchers to promote inclusive team cultures, strengthen their PPIE activity and respond to marginalised groups of people in complex situations. It can help to address criticisms of PPIE, on account of the 'harm' patient/public contributors can experience based on (hidden) emotional labour, alongside power imbalances, and existent health vulnerabilities. Whilst there exists some guidance concerning PPIE in terms of reporting, the paper proposes an EoC lens underlining five overlapping aspects: attentiveness, responsibility, competence, responsiveness and solidarity to improve inclusivity, mitigate harms and reshape relationships between researchers and participants.

An EoC approach reframes ethics, for PPIE, not as a procedural task. It highlights that an EoC is a form of relational ethics and underlines the ongoing relational practice that makes up PPIE, which demands attentiveness to lived experience, structural inequalities and the emotional realities of involvement. This perspective strengthens the ethical integrity of PPIE by encouraging more reflexive, compassionate and equitable engagement across research contexts.

Members of a parent carer network were involved in preparing the manuscript. They reviewed the paper in both a lay summary version and the longer full version, providing written and verbal feedback. Their suggestions have been incorporated into the main text, including the addition of examples in the table.