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International government guidance recommends patient and public involvement (PPI) to improve the relevance and quality of research. PPI is defined as research being carried out 'with' or 'by' patients and members of the public rather than 'to', 'about' or 'for' them ( http://www.invo.org.uk/). Patient involvement is different from collecting data from patients as participants. Ethical considerations also differ. PPI is about patients actively contributing through discussion to decisions about research design, acceptability, relevance, conduct and governance from study conception to dissemination. Occasionally patients lead or do research. The research methods of PPI range from informal discussions to partnership research approaches such as action research, co-production and co-learning. This article discusses how researchers can involve patients when they are applying for research funding and considers some opportunities and pitfalls. It reviews research funder requirements, draws on the literature and our collective experiences as clinicians, patients, academics and members of UK funding panels.
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Pat Hoddinott
University of Stirling
Alex Pollock
University of East Anglia
Alicia O’Cathain
Sheffield Teaching Hospitals NHS Foundation Trust
SHILAP Revista de lepidopterología
F1000Research
University College London
University of Bristol
University of Sheffield
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Hoddinott et al. (Mon,) studied this question.
synapsesocial.com/papers/69dbd28c5b363cdf1c835fd8 — DOI: https://doi.org/10.12688/f1000research.15162.1