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Public and Patient Involvement (PPI) in health research. Initial HRB survey results

2 June 2016

A total of 391 people, 226 (58%) researchers, and 165 (42%) members of the public and patients took part in a recent online survey on this topic. Dr Anne Cody (HRB), author of the survey, talks about some initial findings.

The survey essentially asked 'What should the HRB do to encourage and develop  (PPI)* in research in Ireland?'

Researchers said...

Overall there was a very positive attitude towards PPI in this self-selected sample, with almost all researchers stating that they would be interested in including PPI into future research, particularly if they can get practical support. There was also a very positive assessment from those researchers who had prior experience with PPI.

Researchers were given a list with eight different types of supports for PPI and asked which they would find most helpful. The most highly rated type of support was practical support, which is not surprising given the limited experience of Irish researchers with PPI and lack of familiarity with the methodology. Awareness raising was also seen as very important, and the biggest barrier identified was finding PPI contributors.

Members of the public said...

Members of the public who responded also reflected positively on previous PPI experiences, although not quite as much as researchers, and they were willing to spend time on PPI activities. The area they expressed most interest in was the identification of research questions.

The public were primarily interested in activities relating to individual projects, such as helping design a study, recruiting study participants or checking readability of study participant material. However some did express an interest to work with funding agencies to assess the quality of the PPI aspect in grant applications.

According to Dr Cody,

'We obviously have to be careful interpreting the results of this survey. Nonetheless, it does give us a thought-provoking insight into our community and some members of the public on the subject. We will use this to inform the HRB's approach to strengthening PPI in our funded research portfolio'.

A high level plan setting out how the HRB aims to support PPI, in line with its Strategy 2016-2020, is also in development. We will engage with the research community, patients and the public in finalising this plan. 

Your thoughts, comments and suggestions on the topic can be e-mailed to Anne Cody at acody(at)hrb.ie

*When we talk about PPI we take it to mean research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them.  This is in line with the definition used by INVOLVE in the UK, who are tasked to oversee active public involvement in public health and social care research. www.invo.org.uk

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