A new paper on ‘involving people with intellectual disabilities’ in the STOP #diabetes study holds lessons for us all

One of the things I feel incredibly fortunate about in doing my role is that people send me all sorts of interesting papers, articles, videos and other stuff.  I do get round to looking at them all, although it can take me a bit of time.

More often than not something will bubble to the surface quicker than the rest.  This might be because of its topicality, its wider relevance or simply that it has been brilliantly executed and is highly accessible.

This paper – Involving Service Users with Intellectual Disability in Research: Experiences from the STOP Diabetes Study – just published in the Journal of Policy and Practice in Intellectual Disabilities, seems to hit all these buttons and more.

It’s an almost forensic but nonetheless easy-to-read examination of the research team’s approach to public involvement in this important study.  Each aspect of the way in which people with intellectual disabilities are involved is looked at in some detail – from study publicity to the training of staff.

In what I think is a refreshingly honest and candid conclusion the authors then posit some recommendations that we would all do well to heed: the need to involve people early in the development of a research study; the importance of addressing practical barriers to involvement – from research setting to facilitation;  dealing with the pain of payment issues; the benefits of casting your net wide for people to involve; the fact that public involvement is an on-going activity not a smash and grab raid on people’s expertise and insight.

For me there’s a message running through this paper that with due care, proper planning and assiduous attention to the task, there is no such thing as a ‘hard to reach’ audience, only marginalised groups that we have excused ourselves from working with for far too long. A subtle but important difference.

The approach to public involvement in this study was by no means perfect – as the authors admit.  But the paper is all the more compelling and helpful for this reason. Anyway, what is perfect PPI?  I’ve yet to see it and would be suspicious if someone claimed to be doing it.





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