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Service user involvement or Patient and Public Involvement (PPI) is now a fundamental requirement for most categories of research in the eyes of major institutions responsible for research funding and research governance in the UK. Whereas we have some ground to catch up with mental health service research, supportive and palliative care research is particularly suited to consultation with the families and carers of patients following an experience of care.
Although regarded by some researchers as just another bureaucratic hurdle to jump, there are clear ethical and practical imperatives to meaningful engagement with the process. The arguments for incorporating PPI into institutional practice are essentially twofold.1
The deontological consideration is that patients, their families, friends and carers, as well as members of the public with a stake in improving healthcare have a legitimate interest in our work. This argument is particularly cogent when taxpayers or charitable donors fund services, education or research. The view that health care professionals and academics are ultimately the servants of society would lead us to seek the permission and allow the scrutiny of our lay peers.
The teleological …
Competing interests All three authors are heavily engaged with patient and public involvement processes within the UK charity, Marie Curie as well as other charities and academic institutions.
Provenance and peer review Not commissioned; internally peer reviewed.