The language of patient and public involvement and how not to mess it up


October 2018

Language is perhaps the most valuable tool that we have as humans. It is important in not only conveying our meaning, but also as an instrument of positive change. During numerous recent meetings I have found myself immersed in discussion on the language of patient and public involvement (PPI). These discussions have left me, at different times, intrigued, confused and occasionally exercised.

However, through them, I have learned that in Australia patients are referred to as consumers but, in the UK, consumers is rejected as a term because it inspires thoughts of Thatcherism and an element of choice that doesn’t tend to come with illness. The term lay people is used in many contexts around the world but, for some, it can invoke thoughts of the church. The term service users is frequently heard but there can be negative connotations associated with the term ‘user’ or, alternatively, it can be viewed as simply meaningless. There are also differences between terms used, depending on whether mental or physical health is being referred to. When dealing with physical issues, people are almost always referred to as patients but in the mental health and also the intellectual disability sectors it is rightly seen as being very important that people are referred to first and foremost as simply people. Clearly, the language choices of involvement are not something to be taken lightly.

What I have learned most of all is that there is no one-fits-all solution. Instead we must resort to our natural human skill with language and draw on a range of terms, in response to the context we find ourselves in. The use of the term ‘patients’ can be appropriate in a broad medical or health research context. It is clearly understood and fits with the phrase ‘patient and public involvement’, particularly in the context of health research. Referring to the involvement of members of the ‘public’ is also often appropriate and tends to be non-controversial. In some instances however, it fails to convey the irreplaceable expertise held by people who live with a long-term health condition.

While such broad terms have their place, when dealing with a specific population affected by a health condition, the term ‘patient’ is best avoided where possible. It can imply that people are little more than their diagnosis and it can exclude their family members and other carers, who are also often deeply affected, albeit in a different way. Person-first language is therefore generally the best option, when possible. Preferred phrases are often along the lines of ‘people with’ or ‘people affected by’ a particular condition. The phrase ‘people living with’ can be a useful way of extending the circle of those affected to include family members and others who care about someone impacted by a condition or disability.

While not necessarily practical for use in all contexts, occasional use of terms such as ‘experts by experience‘ can be powerful in emphasising that expertise doesn’t always come with academic qualifications. When talking specifically about a research project, terms such as ‘PPI contributors’ can be useful in denoting a particular role within the project team.

Perhaps I have now left you feeling daunted and that discussions around PPI should not be ventured into, for fear of offending. Take heart though as, over the years, I have also learned that people are forgiving. Once you always act from a point of respect for the people you want to involve and once you start by asking them what language they would prefer, you won’t go too far wrong and you will be forgiven when you do.

Now, I need to go and consider whether I need five different versions of this blog title.

NoteThis blog is an expanded version of a section in a recent Medical Research Charities Group (MRCG) guide on developing a PPI strategy. Thanks to those whose views who struck a chord with me and worked their way in here – Bec Hanley, Derek Stewart, Sarah Bowman and Naomi Kennan to name a few.