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
- 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.
Andrew gets impatient with debates about what to call people who get involved, and sees PPI’ as a generally accepted term.
No label will ever be perfect and Peter thinks PPI’ is as good as any. It’s what you do that matters.
Patient and public involvement’ is probably the best description, but PPI’ can be confusing. Richard says we need a better name for it.
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’.
Catherine calls herself a parent carer representative. PPI’ is an off-putting term.
Maggies group told the research institute director they are not representatives. They don’t like the word consumer’, but prefer patient advocate.
Tom isn’t there to represent anyone. There are lots of terms but consumer or lay person are as good (or bad) as any.
Charles doesn’t like acronyms like PPI’ or the term service user. Patient representative has a clearer meaning.
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’).
Dave G thinks it’s unclear who is or isn’t a patient. He prefers the term lay researcher.
Service user’ feels patronising to Brin; he thinks patient’ is better, or stroke activist.
Mary calls herself a mental health user consultant. Shes happy with patient’ and lay person’ too, but it’s confusing when retired professionals on ethics committees are called lay.
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.
Some people like to be called service user’, others don’t. Rosie likes research partner’ but it could mean other university researchers. In the end what you’re called doesn’t matter.
The meaning of research partner’ is unclear and could make people feel excluded. Hazel prefers member.
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’.