PPI-inch PPI-unch, first day of the month! Get your public involvement in early

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Doctors call it the ‘doorknob syndrome.’ That moment when a patient, as they leave the consultation room, opens up about the most worrying symptom or issue that is really behind their visit.

I am sure I have done this on more than one occasion as a patient. Fear, apprehension, embarrassment, an uneasiness that your revelation will fall on an unsympathetic ear. These are just some of the reasons for it, even though logic tells us that leaving it – whatever ‘it’ is – to the last minute, increases the chances of an unsatisfactory outcome for both ourselves and our doctor.

But it’s not just patients who are prone to a hand-on-the-door moment.

In public involvement I find that many researchers leave it to the very last minute to think about public involvement in their project. They don’t just leave it to the moment when they start to do their grant application. No, they leave it to the moment when the ‘PPI box’ (if there is one of course) is the last box to be filled. Probably hours or even minutes before the deadline. What results is a sorry excuse for public involvement.

How many times have you had that call with a researcher along the lines of ‘do you know someone,’ ‘I just need a sentence or two,’ ‘can you write me a paragraph?’ I had a conversation like this only last week. I confess that my inner growl is usually smothered by English politeness and a desire to help. The lecture can come later.

Such last minute behaviour is a missed opportunity to do an even better research proposal. All the available evidence points to the fact that the earlier researchers involve the public in thinking about an idea, the better an idea becomes and the more efficient and effective it’s implementation.

Sometimes the underlying reason is a disdain for the whole idea of public involvement. But most of the time I think it’s fear, apprehension, embarrassment and uneasiness about where to start, having to own up to a lack of knowledge.

Researchers now have few excuses for not thinking early about their public involvement. Many organisations such as the NIHR and Wellcome Trust offer small pots of money to involve people at the design stage. Even where this is not possible there is a growing movement of people, groups, charities and others who are only too willing to help. Not to mention guidance from
INVOLVE or case literature from one of the new journals such as ‘Research Involvement and Engagement’ or ‘Research for All.’ Remember, good public involvement like anything takes time. It’s all in the preparation.

As the traditional saying for the first day of every month suggests – banish your PPI demons early and for good.

Simon Denegri
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Twitter: @SDenegri
Blog: https://simondenegri.com/