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What exactly is PPI? (in a research sense…)

Years of studying sociological theories, research methodologies, and gaining experience in data collection and analysis can only take you so far. In the current research climate, it is seen as a form of good practice for research to be informed by the opinions of the public.  The NIHR (National Institute of Health Research), who are lovely enough to fund my research, define public as “patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services” [1].

NIHR refers to this input from the public as PPI (Public and patient involvement), and describes it as “essential” to the development of healthcare services [2].  They argue that PPI can be gathered at any point in the research process, and improves the relevance and quality of research in many ways, such as:

  • providing a different perspective on the study (especially from those with a health condition);
  • making language and content for research tools, consents forms etc. more accessible and clear for participants;
  • making the study more sensitive to participants (and so aiding recruitment); and
  • ensuring the relevance of research topics and outcomes to the public [1].

So, for our project, we sent a copy of the interview schedule – the questions that we were going to ask participants in the interviews – to the Young Person’s Advisory Group (YPAG) to check their clarity and appropriateness for children and young people – aka “youth proofing” [3].  Based at the Birmingham Children’s Hospital, YPAG are a group of 11 – 18 years old who generously volunteer their time and energy to give help to research projects such as ours [3].

I attended the YPAG session to explain in person the origin and the aims of the project to the group and what feedback I hoped to get from them.  I distributed printed copies of the questions in large fonts that could be more easily read, though still with plenty of space for them to write comments around.  The next few minutes were spent in silent concentration as they made their way through the printouts.

I then asked about any comments they had for each question, and made an effort to bear in mind that it was essential for them to feel that their views were “valid and important” and that they were being “listened to, responded to and understood” [4].  Whenever I thought someone had misunderstood something or disagreed with them, I didn’t tell them directly, but instead I checked that I had understood them correctly; or responded by emphasising the positives that we were already doing, intending to do; or how we could change things.

Given how vital phrasing is to research with children and young people [5], it is perhaps not that surprising that most of their comments were around this.  One question potentially being too direct; another being ambiguous; another could sound ‘friendlier’; and another could be phrased slightly differently to avoid “alienating” the participants.  Their words, not mine!

From my experience, I can say PPI was invaluable for research with children and young people and it definitely should be used from the start [5].  I think the NIHR are right in their assertion that PPI provides a different perspective; makes our questions more sensitive and more accessible to our future participants; and will ultimately lead to better data being gathered [2]!

Natalie Tyldesley-Marshall

Edited by Farina Kokab

[1] National Institute of Health Research [NIHR]. (2016) Public involvement in your research. http://www.nihr.ac.uk/funding/public-involvement-in-your-research.htm

[2] National Institute of Health Research [NIHR]. (2016) Public and patient involvement. http://www.nets.nihr.ac.uk/ppi

[3] Birmingham Children’s Hospital (BCH). (2016) YPAG. http://www.bch.nhs.uk/story/young-people/ypag/ypag

[4] Lewis, A. & Porter, J. (2004) ‘Interviewing children and young people with learning disabilities: guidelines for researchers and multi-professional practice’, British Journal of Learning Disabilities, 32 (4), pp.195. doi: 10.1111/j.1468-3156.2004.00313.x

[5] McDonagh, J.E. & Bateman, B. (2012) ‘Nothing about us without us: considerations for research involving young people’, Archives of Disease in Childhood: Education and Practice, 97, pp.55-60. doi: 10.1136/adc.2010.197947

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