Participant or Partner? What makes Involvement special

One of my jobs in Primary Care is to work with our Patient & Public Involvement group, and also with researchers hoping to do PPI, to provide training in what PPI is and how you can do it. One of the problems we run into most often is people getting confused about patient participation in research compared to patient involvement in research. They might say something like “we’ve already done some PPI, because we did qualitative interviews with patients” – whereas I would say that the patients in those interviews have participated in the study, but there hasn’t been any PPI because that requires involvement. In some cases, then researcher may then argue that those two things aren’t really that different at all, and we’re wrong to try to carve them apart. I think this is a mistake, and I want to try to illustrate why. So, if you’re a researcher, try thinking about these two scenarios, and whether you think they’re different:

Scenario 1:
I’m conducting a study about what researchers eat for lunch. I send you a letter explaining the study and asking if you’d be willing to help us by taking part, so we can answer this pressing research question. I arrange a time for us to meet, and ask you a series of questions about what you ate for lunch and why, and whether you think it’s important that Universities start providing better lunches for their staff. I ask how you think this could be achieved. Months later, I send you an email with a short summary of my findings, including a quotation from you about ordering domino’s pizza every day. I make a series of recommendations about lunch, including the need to make sure staff have healthy fruit & veg options in the cafeteria.

Scenario 2:
I’m conducting a study about what researchers eat for lunch. I send you a letter explaining the study, and asking if you’d be willing to help us by becoming a PPI contributor. I arrange a time for us to meet, possibly with a group of other researchers who also replied to my letter. I explain the reasoning behind the study, and ask you what you think. You might comment that having access to better lunches would be easier if there was a closer café on site, or if there were clear rules about staff getting a lunch hour to get their food rather than having to order a domino’s. You suggest some changes to my questions, asking about access to dining halls and time taken over lunch. Once I’ve conducted some interviews, we meet up again and I tell you about the findings. We discuss them, and develop a series of recommendations together.

So – the same, or different? Hopefully, you can see from these examples that being involved in research and being a participant in research are different things.

Now, you might think I’ve biased the scenarios by having the conclusion of the second vignette seem stronger than the first. But even if we take out the part about the study findings, I think you’ll agree there’s still a very definite difference in what’s being done right at the beginning. In the first case, I’m asking you to be in the study, to be a subject of my investigation. You give your opinions, and I aim to reflect them and use them properly to inform my recommendations. In the second example, I’m asking you to help me with the study, to act as a collaborator – or a critic – and guide what happens in the research itself. You are helping make the study, rather than being in it. It’s of course possible that my qualitative interviews in Scenario 1 would have still have revealed the issue of missing lunch hours. But you would have played a very different role in finding that out.

I should be clear that I don’t see anything wrong with the first case as such, and can imagine lots of cases where it’s most appropriate – if I’ve been funded to specifically ask about healthy eating for example, or more pragmatically if I’m on a very limited schedule and don’t have capacity to modify my interview schedule. But I think it’s clear that the second example has the patient (or researcher in this case) in a different role, making a different contribution.  Research is being done with them, rather than to them.

This is why, when I see descriptions of qualitative research labelled as ‘PPI’, I get cross. Because PPI is something special, I think – it is a specific opportunity and a new way of working together. I’m not trying to imply that if you do traditional qualitative research you’re completely ignoring patient opinion – obviously this isn’t the case. But you are deciding, for example, which aspects of that opinion you focus on, perhaps even what it really means. Again, there is no reason this creates bad research – you could produce very good, important work. But it isn’t PPI. And if we are claiming to funders, to journals and to members of the public themselves that we are doing PPI, then I don’t think it’s right to do something else and pass it off as ‘like’ PPI. If we are claiming that we are being inclusive, and involving people, and trying to learn from them – then that’s what we should do.

I talked once to a researcher in social psychology, who was looking at behavioural and attitudinal responses to do with healthy eating. He said that PPI wouldn’t be appropriate for him, as in psychology you often don’t ask people what they think they’d do, you set up a study to see what they actually do (as there are lots of biases and funny ways of thinking that people might not report, but that affect their behaviour and which we can observe in an experiment – the tendency to eat more when we’re in a group than when we’re alone for example.) I would class this as another example of confusing participation with involvement. It’s perfectly acceptable and right that he designs his studies so he observes behaviour rather than trying to ask people what they’re going to do – there’s lots of research showing this is the best way to look at this particular issue. But PPI isn’t about asking people to ‘do’ the study, to observe them and analyse them. It’s about asking them what they think of the study, how it’s done and why it’s important.

You might say now – aha, but surely lots of members of the public aren’t trained experimental psychologists, who can comment on his method? True. But I always think at this point about the start of grant applications in health research, when researchers wax lyrical about how exceptionally important their topic area is. I don’t think I’ve ever seen a grant that says “It’s not important to the public or anyone with a health condition, I’m just doing it for the lolz.” To me, if the project is genuinely important, then I am 100% sure there would be a patient or member of the public somewhere who’s interested. In the case above, maybe someone who runs their local Weight Watchers, or just someone who saw Jamie’s School Dinners and wants to know what’s being done to help. And while they might not be able to comment on the methodology, they could have insights into how best to recruit participants, or suggestions on how to disseminate the results, or ideas about future studies (such as repeating the experiment with people at weight watchers or with kids at a school.) And actually, they may have some interesting insights to help the researcher – because they can imagine being the participant and highlight things that might influence them (I’m reminded of a cognitive psychology colleague who was looking at how eye movements were influenced by positive images, such as happy faces. One of her ‘neutral’ control images was a glass of beer, until someone pointed out she was experimenting on undergrads and might want to choose something a bit more neutral than that…)

So, that’s why to me PPI is useful, and why involvement and participation aren’t the same thing. What do you think? I’d be interested to hear your views, particularly if you think you have a good counter argument or if you think I’ve over simplified things! Comment below, or catch me on twitter @dr_know.

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