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Research in Practice
Public and patient involvement in paediatric research
  1. Jessica Bate1,2,
  2. Neil Ranasinghe3,
  3. Rebecca Ling2,
  4. Jennifer Preston4,
  5. Ruth Nightingale5,
  6. Simon Denegri6
  1. 1Department of Paediatric Oncology, University Hospital Southampton, Southampton, UK
  2. 2Department of Paediatric Oncology, Royal Marsden NHS Trust, Sutton, UK
  3. 3Co-founder of Paediatric Oncology Reference Team and Parent of Child Treated for Leukaemia, London, UK
  4. 4Public and Patient Involvement Manager, NIHR Alder Hey Clinical Research Facility, Liverpool, UK
  5. 5Joint Lead for Patient and Public Involvement and Engagement in Research, Great Ormond Street Hospital/University College London Biomedical Research Centre, London, UK
  6. 6National Director for Public Participation and Engagement in Research, NIHR; Chair, INVOLVE, London, UK
  1. Correspondence to Dr Jessica Bate, Department of Paediatric Oncology, University Hospital Southampton, Tremona Road, Southampton, UK; jessica.bate1{at}nhs.net

https://doi.org/10.1136/archdischild-2015-309500

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    What is public and patient involvement?

    Public and patient involvement (PPI) in health research is a dynamic partnership between patients and/or members of the public and researchers. Involvement is distinct from being subjects of research (participation) as patients contribute to the research process as advisors and sometimes co-researchers. In practice, this may mean involvement in prioritising and developing research ideas, contributing to study design, carrying out the research and research dissemination.1 It should be emphasised that involvement is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.2

    Why is PPI needed?

    PPI offers researchers valuable and unique insight into the particular condition being investigated to make research more relevant to patients. PPI is needed to improve the quality of research and increase accountability. It is also reported to have benefits of increased recruitment and retention of study participants.3 The reasons for this are varied. The research questions are more likely to be aligned with outcomes valued by patients. Recruitment materials designed with the public will be written more suitably and with greater relevance. Importantly, the public bring important insight into how burdensome study requirements are to everyday life. Additionally, the idea of PPI is itself appealing, which increases willingness to participate in research.

    For today's researchers, active PPI has further relevance as funding bodies frequently require evidence of PPI in the development of a research proposal and ask how patients and the public might be involved in the conduct of the research. For patients, it is ethical for them to have a voice in research that may have an impact on their health.

    Dame Sally Davies, chief medical officer for England, advocates PPI as the rule rather than the exception:No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. …

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    Footnotes

    • Correction notice This paper has been amended since it was published Online First. The affiliations have been corrected.

    • Twitter Follow Jessica Bate at @jessica_bate

    • Contributors JB conceived the idea and led on writing of the manuscript. Contributions were received from NR, RL, JP, RN and SD, and all authors edited the final manuscript.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.