‘Care’ in public, patient participation as an ethical practice

Dr Kanwal Mand is a Research Fellow in the INSiGHTS team, part of the Mental Health in Development theme at the Oxford Health Biomedical Research Centre. She’s also a member of the BRC Qualitative Social and Behavioural Research Network. Here she reflects on the ethical considerations of patient and public involvement.

One of the boundaries that separates qualitative research participants (those taking part in a study) from public contributors (members of the public who are involved in the design and running of a study) is that the latter are partners from whom research data is not collected. This means ethical approval is not required.

The growing emphasis on inclusivity in patient and public involvement and engagement (PPIE) reflects a broader ethical and political commitment to equity in health research. PPIE aspires to challenge exclusionary practices and amplify the voices of under-represented communities.

At the same time, ethical issues do arise in PPIE. A key consideration is under-representation in PPIE, which has profound consequences for marginalised communities. These communities already experience long-standing health inequities and encounter multiple barriers in accessing services. We have been thinking about the ‘grey area’ and note the calls for an ‘ethical anchor’ in PPIE as a strategic priority.

Our thinking has led us to explore an ethics of care perspective (EoC) for PPIE practice, where ethics is grounded in attentiveness to power, relational responsibility, and the lived realities of those involved. We hope to publish our article soon, which draws upon Carol Gilligan’s 1982 book In A Different Voice and Joan Tronto’s 1993 book Moral Boundaries: A Political Argument for an Ethic of Care.

An EoC perspective departs from ethics as a procedure based on abstract universal principles (‘do no harm’), instead placing ethical value in relationships, interdependence, and care as situated practice.  It is about ethics as relational practice and goes beyond proceduralism.

The framework enables a critical reorientation away from a focus on methods and outcomes towards a commitment to relational ethics in practice. They allow researchers to consider not just what is done, but how, why, and with what consequences for those involved.

This matters because many current PPIE practices assume neutrality in participation, whilst there is an awareness of under-representation.

The EoC framework explicitly challenges this, demanding that we understand participation as relational and situated within historical, social, and institutional power structures. It positions ethics as a political undertaking that must grapple with exclusion, inequality, and lived experience as central for ethical PPIE research practice.