Researchers' experiences of patient & public involvement

'Representativeness' and diversity of people who get involved

A common concern in patient and public involvement is about what type of person gets involved, how many of them are involved, and how far they can be said to ‘represent’ other people and patients. Many researchers argued strongly that involvement was not about having a representative sample (see below), but the use of the term ‘patient representative’ is common and can be misleading. For some researchers it remains a worry.

Concerns raised in interviews included making changes to research based on the views of only a minority of atypical people; the idea that a meeting might be dominated by a someone ‘with an axe to grind’ or those who ‘shout the loudest’; and that people who volunteer for research involvement may be more interested and engaged in their own health than a typical research participant might be.
The question of how to tap into wider perspectives was a common theme, with mixed views on whether voluntary organisations or patient groups could help. Some felt this could be a useful strategy, but others felt it was more important to hear the lived experience of individuals. In some cases people talked about individuals who get involved going out and canvassing views from a wider group, but as Carl pointed out ‘that would be a lot of work’ to expect from one person.
The need to work towards greater diversity in involvement was generally acknowledged by researchers we talked to, and we explore this further below. But at the same time, many argued that diversity was not the same as representativeness, that people who get involved cannot be expected to be ‘representative’ and that looking for a representative PPI sample misses the point. Sarah A said she prefers not to describe people as ‘patient representatives’ for this reason. Adam reflected that, ‘I really have learned a lot from the two people I’ve been working with in detail.’
There was some feeling that lack of representativeness is used as an excuse not to do PPI – because you will only ever get a small number of opinions – and that it risks confusing PPI with research, where the need for a representative sample may be essential for some studies. 

Nonetheless, researchers did agree it was important to find ways to broaden the range of people, experiences and opinions feeding into research, and they often acknowledged this was a struggle. Valerie, for example, explained she was ‘squirming a bit’ as she reflected on how far they still had to go in involving a diverse group, and said, ‘I think really we should maybe think about this a bit more.’ Sarah A pointed out that ‘the white, middle class, retired PPI partners that I work with all say that as well. They acknowledge that this is a problem and they really want to do something about it as well.’ 

This is an issue with many dimensions, including the age, social class, ethnicity and educational level of those involved. There was general support for the idea of finding more creative ways to involve people beyond inviting one or two people onto a traditional committee, and recognition that it may be more helpful to see people as ‘seldom heard’ or ‘easily ignored’ rather than ‘hard to reach’, placing the responsibility back with the researcher – as Stuart said, ‘I loathe the phrase - it’s not hard to reach… it’s our problem, not their problem.’ (See also ‘Finding people to involve in research’). 

At the same time, several difficulties were discussed, including time and cost, geographical limitations (particularly working in an area with low ethnic diversity), and wanting to continue to allow people to self-select.
The question of how far lived experience matters was a common theme. Most researchers we talked to felt it was very important for their projects, perhaps not surprisingly given that most were working on research into specific conditions. They recognised it depended on the kind of insights and perspectives you were looking for. Alison (see above), for example, said for emergency care research, “Any of us could be carted off in an ambulance today, you never know… So to have any kind of almost randomly selected person is as good as any other.’ In some cases such as funding boards or research ethics committees the input will also be more generic than in single research projects.
On the other hand, Anne queried how useful generic lay input is, and Marian wondered whether the public view on funding panels is almost over-represented.
One point raised by Anne was that researchers and clinicians also have experience of using the NHS, and sometimes of specific conditions. Several researchers pointed out that both professionals and patients have multiple identities, but there was disagreement over how far it was right for researchers to bring in their own experience, or even disclose it. Generally researchers we talked to felt researcher experience should only be shared carefully and should not count as involvement, but sometimes the double insight could prove useful. (See also ‘Feelings about involvement and emotional consequences’).

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