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Service user and patient and public involvement in palliative and supportive care research
  1. Bill Noble1,
  2. Peter Buckle2 and
  3. Ben Gadd1
  1. 1Academic Unit of Supportive Care, Sheffield Hallam University, London, UK
  2. 2Marie Curie Expert Voice and Volunteer Ambassador for The Brain Tumour Charity, Kenilworth, UK
  1. Correspondence to Professor Bill Noble, Academic Unit of Supportive Care, Sheffield Hallam University, Marie Curie, 89 Albert Embankment, London SE1 7TP, UK; bill.noble{at}mariecurie.org.uk

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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 …

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