Blog: Have you ever knowingly been oversold PPI in research? Then, there’s help at hand #howtoinvolve

I didn’t think so.

Do you get those nagging calls about PPI? It’s usually early evening. Sometimes it is a recorded voice message. Sometimes a text. Very occasionally it is a real person from the unreal environment of a call centre. Unfortunately they are all contacting me about that other PPI – yes, Payment Protection Insurance. Those financiers and bankers really stole our thunder didn’t they when they called it PPI? (By the way you should go and see ‘The Big Short’ if you haven’t already).

Sorry, I digress.

If only, if only, we had a legion of sales people ringing innocent victims around the country to tell them about public involvement in research; to offer them the latest products which will make their day brighter and easier. At bargain prices and in any shape, size or colour that fitted them best.

Particularly to sell the message to researchers – cash-strapped, time short, expected to do more with less, downtrodden. Hang on, they sound just like patients and the public. Perhaps they are, secretly, when they are at home and no one is looking.

Fact is that we have lots of volunteers who do this round-the-clock. But we just don’t have phones for them and sometimes the products they need. But this week, two ‘how to’ guides have emerged that I think will be great additions to our stock.

The first – and I truly love this one – is a new guidebook to patient and public by Parkinson’s UK: ‘Patients and Public Involvement: A Resource for Researchers.’ It’s beautifully presented and a pleasure to read with lots of great advice. Parkinson’s UK is proof positive that you can go from being an organisation that is average in public involvement to being an exemplar. It just takes will and dedicated people with smart ideas.

I once rather flippantly referred to EUPATI as sounding like a dish you order from a take-away. But here’s one take-away from them you won’t regret (is it me or am I sounding more and more like a judge off Strictly Come Dancing). The European Patients Academy have launched their long awaited toolbox on medicines development that looks at every aspect of this activity including public involvement. A quick look suggests it is comprehensive and will be a rich and vibrant source of information. I particularly like the access to lots of current articles. Good job EUPATI.

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