Have you ever been miss-sold PPI? Why it matters how we refer to public involvement

Following the recent conference on International Perspectives on Evaluation of Patient & Public Involvement in Research held at the University of Newcastle on 15th and 16th November (live stream available here) there were a lot of interesting posts and threads on Twitter (#intppieval18). These included some on how patient and public involvement and the people who get involved should be referred to. Many of those commenting said they didn’t think it mattered other than that people were happy with the terms they used including abbreviated terms.

However, I believe that it matters how we refer to the involvement of the public in research in order to maximise its chances of becoming usual practice and so fulfil its potential. And I believe that we need to use consistent and clear language, Plain English no less, as best we can to explain what it is and how it can help make research better. And for me that means not using the “Payment Protection Insurance” abbreviation in all of its many forms (noting that it is not an acronym because it is not pronounced as a word and strictly speaking is an initialism). It doesn’t really matter what term we use so long as the people we talk to understand what we are talking about and using that horrible abbreviation does not help us to do that.

At this point those who know me well and my views on this may well be thinking “here we go, Jim’s off an another canter round the paddock on his favourite hobby horse, yawn yawn!”. And while I can’t resist a little trot about, which I have saved for the post script, I am going to try to persuade you why this actually matters and the difference I think being clearer and more consistent can make.

My main point here is that I believe it is very unhelpful to use abbreviations to refer to public involvement. My case for this is based on two things. The first is the lack of consistency in how public involvement is referred to. The second is a more general one about when it is and is not helpful to use abbreviations. And the two are linked.

I am sure everyone in what we might call the “public involvement community” is aware that what some of us refer to as “involvement” others refer to as “engagement” or even “participation”. That in itself does not matter so long as we are clear about what we are talking about when we use whichever term we prefer and that we consistently use the same term and explain what it means to people who are not familiar with it. To do otherwise will lead to confusion, and indeed it currently does. The only way that I can see that this sort of confusion can be avoided is by us all practicing what we preach by using clear and plain language, even if that means taking longer to say whatever it is we want to say. I also wonder whether it might be better all round to avoid using any of those three terms together and simply talk about working with the public? But that is for another post.

What matters most is that we are clear that we are talking about professionals working in partnership with patients and the public and that things change as a result. So, as I say, what we call it does not matter that much in itself so long as everyone we speak to knows what we are talking about. And I really do not believe that using abbreviations helps to achieve that.

The confusion caused by there being two other ways to refer to what I and many others call “involvement” is added to because the other two, “engagement” and “participation”, have other meanings that are commonly used in health and social care practice and research. If someone talks about engaging the public or public participation they might be talking about involving the public (as I define it), but equally they might not. They might be talking about a communication exercise to inform the public about something, using either of those terms. And in the UK in relation to clinical research we use the term “participation” to mean taking part in a research study as what used to be referred to as a “subject”.

The variability in how involvement is referred to in the first place means that if we use an abbreviation for our own preferred term that is only likely to make sense to people who use the same [long hand] term. And in speaking to someone or writing about it how can we be sure that the people we are addressing use the same term and will understand the abbreviation?

That takes me to the second point about using abbreviations (and acronyms). In all walks of life we use short-hand terms and abbreviations for things we are familiar with to help us communicate more quickly. We tend to call that “jargon” and it is absolutely fine so long as we only use it with people who understand and use the same jargon as us. But if we use a form of jargon with people who are not familiar with it then it excludes them from the conversation.

In public involvement in health research two of the key principles, which are now part of the National Standards for Public Involvement are about being inclusive and communicating clearly. One of the great things about health and social care research and involving patients and the public in it is the sheer diversity of the people involved both as public contributors (the short-hand term I and many others use for the people who get involved) and researchers and practitioners. We set a poor example to people new to public involvement and in particular those we are trying to convince of its value if we immediately let ourselves down by using our own jargon and so fail to live up to the National Standards.

The other point about abbreviations is that in using them we assume that the people we are talking to understand what they mean. That might well be reasonable for the small number of very widely known and used abbreviations, such as ‘NHS’ or ‘DNA’. They are ones that many of not most people from most walks of life will probably have a reasonable idea of their meaning even if they can’t say what the letters actually stand for. And there are acronyms in common usage that have been absorbed into our language, such as ‘radar’, ‘laser’ and ‘scuba’. But the abbreviations that so many people use in health and social care research and practice are not well known to those outside their narrow confines. And to assume that everyone understand them is, as the saying goes, to make an “ass of you and me”!

So let’s all live by the National Standards for Public Involvement by working together in ways that value all contributions and use plain language to communicate. For me that means not using abbreviations for anything as best I can, but acknowledging that I slip up from time to time, and being clear that when I talk about public involvement I mean professionals working in partnership with patients and the public and being prepared to explain what sort of “public” that might include.

 

Post Script: Pedant’s Corner on the grammatical abuse of the “Payment Protection Insurance” abbreviation (initialism) thus proving that many if not most of us have been “miss-sold PPI”!

Having made what I hope will be taken as a serious case for not using abbreviations for public involvement I can’t resist exercising my hobby horse a bit about them! I was taught at school and by my parents, who were sticklers for correct grammar, it is fine to use an abbreviation or acronym but there are two Golden Rules about how you do that. The first is that you spell or say it out in full the first time you use it. And the second is that what you write or say using one should be exactly the same as if you were writing or saying the abbreviation in full.

The second Golden Rule helps to avoid the grammatical abuse, the worst of which is when abbreviations get turned into nouns and verbs or when they are used with words from the abbreviation. One of the most common of the latter is “PIN number” where the “N” means number, hence what people are saying is “personal information number number”. With “PPI” the list of grammatical abuses is quite long but common ones I see and hear (with apologies to the many people I know and respect who use some of these) are: “PPI involvement”, “PPIing [something]”; “I’m a PPI”; “the PPIs [for a project]”; and I could go on but that is enough! Hardly clear and inclusive communication is it as well as being gobbledegook? Neigh, neigh….trot, trot…!

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