Patient and public involvement in research

How do people who get involved want to be known?

Many different terms are used to describe people who get involved in research, including:
  • ‘PPI’ representative/member            
  • Patient (or carer) representative/member
  • Lay representative/member            
  • Member of the public/public representative    
  • Lay/patient advocate              
  • Lay researcher
  • Citizen representative or researcher        
  • User/service user
  • Consumer or client                
  • Survivor
  • Patient/public/citizen partner      
  • Patient/public adviser  
  • Patient/public contributor  
  • Research partner
  • User or patient research consultant        
  • Expert by experience

We asked people what they thought about such terms and what they would prefer to be called; Rosie said the debate was “a nightmare”. One group of people felt it didn’t really matter. ‘PPI (or ‘Patient and public involvement’) is a widely accepted term – but it can be mistaken for ‘payment protection insurance’, and there was general dislike of confusing abbreviations, which were seen as meaningless and off-putting.
Others had strong (but very different) opinions about particular terms; as Neil said, ‘The whole point now is for researchers to view the input of the lay people as sufficiently important, almost as important as their work itself…. So how they are treated, how their views are received, even how they're labelled has to reflect that respect.’

One disagreement was about the word ‘representative’.
The word ‘consumer’ wasn’t really liked, even by people who used it to describe themselves. Margaret, a member of a cancer consumer forum, said, “It's not a name that I necessarily like and I actually prefer PPI rep or a lay advocate in research.” Roger said, “I dislike the word ‘consumer’, which NCRI [National Cancer Research Institute] uses, despite the fact that I chaired the group for three and a half years.” Carolyn thought consumer sounded “a bit passive”.

There was a wider range of views about words like ‘patient’ (or ‘carer’), ‘lay’, ‘public’ ‘user’ and ‘citizen’. Not everyone who gets involved in medical research sees themselves as a patient or carer. ‘User’ is a common term in mental health, but some people actively preferred ‘patient’ (or ‘carer’).
The word ‘lay’ is sometimes felt to imply a lack of skill or status and is therefore often avoided. Mary wanted to ‘reclaim’ the word ‘lay’ to ensure it didn’t refer to people who came from professional backgrounds, and others agreed it could be confusing. Dave X saw most of the lay members on his local clinical commissioning group as “just people drawn from echelons of business and stuck in there as The Lay Member. They're not really patients or users, consumers as such, so I have difficulty with that – I don't like that term at all.” It also reminded him of lay readers in church. 

‘Research partner’ or ‘patient researcher’ may suggest more equal membership of the research team. Jennifer thought you were more likely to be listened to if you were called a partner. On the other hand, it might also mean academic research partners in other universities or organisations.
Most people agreed there was no easy answer to the question, but researchers need to be aware that it is a sensitive issue for some people. One solution is to ask people how they would like to be called at the start of a new project, and then move on. But Brin and Marney, who are both stroke survivors, said how people refer to themselves may change as they recover from illness and become more involved, so researchers need to think about this too. Both Francesco and Carolyn liked the idea of just using people’s names, and Hazel said that the correct term was simply “person – human being”.
See also:
Representing a range of views and experiences – diversity’ 
Representing a range of views and experiences – being representative

Last reviewed July 2017.

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