An update this week about the national meeting of patient and public involvement (PPI) leads that was held at the end of July. https://oxfordbrc.nihr.ac.uk/blog/its-good-to-talk/. The final report from this meeting has now gone live http://www.invo.org.uk/posttypepublication/report-from-public-involvement-leads-meeting/ and makes for good reading.
Leafing through it, it was nice to see again the Henry Ford quote that opened proceedings “Coming together is a beginning, staying together is progress, and working together is success” and be reminded of the acronym-busting exercise.
Each table was given a list of acronyms for a range of organisations, most of them within the National Institute for Health Research, and asked to identify what the acronym stood for and the organisation’s role.
The conclusion from this process, as set out in the report, was that “many of us feel that we should know what all the different organisations do, but realise that this isn’t always the case. For example, some of us struggle to differentiate between the roles of CLAHRCs and AHSNs.” Hallelujah – I am not alone.
The acronyms we were asked to look at are listed in the report’s appendix. For the record, I didn’t have a clue about two of them, and we had a brief chat at our table about whether – given the hostility to PPI in some quarters – we could safely assume that the NSPCR stands for the National Society for the Promotion of Cruelty to Researchers? (It is in fact the National Institute for Health Research (NIHR) School for Primary Care Research).
As the report concludes “If those of us who work within the NIHR and AHSNs are struggling, what must it be like for patients and members of the public who get involved with us?”
Sadly, I found out an answer this week when a patient rep with whom I work stood down, citing in part “the enormous number of acronyms” that he is expected to deal with as too demanding.
First and foremost, if I have ever contributed to anyone’s despair in this respect, I apologise unreservedly. And secondly, if you read the report, take a look at the very end where the results of feedback surveys of those who took part are summarised. One of the questions was about aspects of the meeting that should have been included or could have been improved. The first on the list? The importance of involving patients and the public in any future meetings like this.
How easily we forget the heart of what we do, and how unforgiveable.