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Researchers - why you should involve the public

Patient and Public Involvement in Research (PPI) - what is it?

Most of our research at UH Bristol is funded by the National Institute for Health Research (NIHR). We offer many people the opportunity to take part in research studies and clinical trials, and research could not take place without the participation and consent of our patients. But we, the NIHR, and charities who fund research recognise that there is another important role for patients and the public to become involved at all stages of research; from designing the study right through to implementation into clinical practice. For example, patient and public involvement (PPI) activities include identifying new areas for research, commenting on patient information leaflets, sitting on the management groups of clinical trials, and helping with dissemination of research findings. This type of activity is known as "patient and public involvement in research" (PPI).

PPI is "...research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them" as defined by INVOLVE, a national advisory group to support greater public involvement in healthcare research: http://www.invo.org.uk/

Why do it?

Involving patients and the public ensures that the research is kept relevant and meaningful to patients; how a medical professional perceives a disease may be very different to the experience of someone living with it. So not only is the quality of the research improved, but also the likelihood of the study succeeding in terms of recruiting patient participants to the study.

All applications for research funding to the NIHR and most charities now require demonstration of PPI at the development stage. There are different levels of involvement, but at a minimum PPI representatives are asked to comment on the study, say whether it is relevant, suggest other areas that are important, comment on whether or not they would take part in the study if funded, and what information they would want before agreeing to take part.

The involvement of the public in research and development is becoming increasingly recognised as an indicator of the quality of a research proposal.

For example to:

  • Help to make sure that issues which are important to consumers, and thus the NHS, are identified. Clinicians may be experts in their field, but that does not mean they can see all the perspectives, particularly from the patient's view.
  • Help to ensure that money and resources are not wasted on research that has little relevance to the NHS
  • Help to ensure that research doesn't just measure outcomes that are identified and considered important by professionals
  • Help to ensure that technologies developed are acceptable to consumers
  • Help with the recruitment of their peers
  • Enable people who are often marginalised, such as those from black and minority ethnic communities, to contribute to research
  • Disseminate the results of research and help to ensure that changes are implemented

How to involve patients and members of the public