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Researchers' experiences of patient & public involvement

Definition, purpose and values of patient and public involvement

INVOLVE is an NHS National Institute for Health Research advisory group that supports public involvement in health and social care research. INVOLVE defines public involvement as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. By ‘public’ INVOLVE means patients and their relatives as well as members of the general public. They make a distinction between:

  • Involvement – where people are actively involved in research projects and in research organisations.
  • Participation – where people take part in a research study.
  • Engagement – where information and knowledge about research is shared with the public.

The Chief Medical Officer (Professor Dame Sally Davies) has stated that “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.”*

We asked researchers how they viewed the purpose of involvement. A common answer was that only people who had experienced a particular condition could really understand it, so the aim of involvement was to bring that expert knowledge to the table alongside researcher knowledge. Tom suggested it was important not to see it through scientific eyes as a ‘fact-finding mission’ but rather about valuing ‘the colour and the nuance and the diversity’ of different types of knowledge.

 

For Andy, involvement is about actively working with patients and the public in order to do better research that will improve health and healthcare.

For Andy, involvement is about actively working with patients and the public in order to do better research that will improve health and healthcare.

Age at interview: 49
Sex: Male
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Right okay so I tend to go with the standard NIHR, you know, INVOLVE definition about actively working with members and patients and members of the public and community members as well in the actual doing of the research as opposed to recruiting people to trials as research subjects or engagement as in telling people about the results from research. In terms of the purpose of the of Patient Public Involvement I think they’re probably almost as many purposes for PPI as there are people interested in PPI and certainly I think one of the mistakes that you can make is to assume that everybody is doing PPI for the same reason and I think one of the problems in research teams when you do PPI is that people are probably expecting to get different things out of it and nobody’s really explicitly addressed or explored it with the end result that at the end everybody might feel a bit frustrated because it didn’t quite deliver what everybody expected. I think its fine to have different expectations and different aims for you Patient Public Involvement you just need to be explicit about them. However having said that I think if we’re all pursuing completely different agendas there’s not much common ground so I suppose if there was a common ground to it then it would be that patient Public Involvement will lead to research that’s more likely to lead to health improvement to improve healthcare for people. And I think that is an objective, whatever specific objectives we’ve got that’s something that the academics and the people in the NHS and the patients and members of the public all feel strongly about, certainly within [CLAHRC], but that’s what we’re here to do, we’re here to do research that is more than likely, that’s going to improve healthcare and treatments and so on for people.
 

For Gail, involvement is about bringing lived experience into research. But we have to be clear why we’re doing it and make sure we do it well.

For Gail, involvement is about bringing lived experience into research. But we have to be clear why we’re doing it and make sure we do it well.

Age at interview: 42
Sex: Female
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I think it’s about people’s experience of; lived experience of the issues brings a very valuable different view to the academic or researched view of, if the area. So there’s something about enhancing the, the scope and the parameters of what you’re, what you’re studying. So improving the inherent quality so. But to do that your need high quality involvement, so just by having young people part of it your research isn’t going to be suddenly brilliant. So you need to think through the processes but I think at the heart for me that’s, that’s certainly part of it…

And then think about why, why we do it so is it because it’s a right it’s a democratic right? Is it because the patient voice is, is different and provides an additional view? Is it, is it about accountability, you know, that by opening up the research process to other groups that we make sure that we are doing it right? So there are many different reasons and I think we need to have that debate a little more so that as individual researchers we can think about these kind of things a bit more. So conceptually I think there are quite a few things we need to get right still or more clear and this idea of involvement being ‘a good thing’ so we have to do it or involvement being something that now to get funding we need to do so we have to do it. Yeah okay but that doesn't, that’s not going to give us the foundation we need for doing it well and doing it in a considered way. So I think we need discussions around things like, like power and decision making that I’ve kind of talked about already, you know. So how do we ensure that people have a capital, you know, and an influence within the things they’re involved in. Just by inviting them in that’s not going to happen, so how do we envisage the decision making process, how do we envisage responsibility?
 

Vanessa argues that people with experience of mental health problems bring a valuable form of expertise to research.

Vanessa argues that people with experience of mental health problems bring a valuable form of expertise to research.

Age at interview: 42
Sex: Female
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So for us involvement is about where we're taking people with a particular expertise, which in our case is living with a mental health problem or supporting somebody who lives with a mental health problem. So they have particular expertise through lived experience of that journey. And involvement to us is involving that expertise and the people with that expertise in research. And that involvement can happen on lots of different levels and so in any project we have to look at what's appropriate and what kind of roles we can support involvement within. But the essence of it in every role it's the combination of having lived the life as it were, either in the role of family or in the role as, you know person living with a mental health problem, obviously people call it different things. But it's that expertise that you're bringing into a research team, into a research project. 
Bringing this expert insight to individual research projects could make them better: more relevant to patients, more likely to be funded, more likely to recruit participants, and in the end more likely to improve clinical practice and patient experience. For Alice and others this was the main point: ‘I would mostly focus on the more effective research, less waste, better outcomes for everyone argument’. Jim commented: ‘Nobody would design a product or a service without finding out whether the customers wanted it… And research is the same. Why design a study to recruit people if they're not going to like it and it's not answering something that’s important to them?’ 
 

Even though he has a lot of clinical contact with patients, Adam feels involvement provides extra insights into how he can improve the focus, design and analysis of research.

Even though he has a lot of clinical contact with patients, Adam feels involvement provides extra insights into how he can improve the focus, design and analysis of research.

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Well as I say if you’re doing clinical research of course you’re always working with patients, you’re always involving them but I guess in my first few research projects I didn’t involve patients in the planning of the research it was essential to have their co-operation to do the research at all because it always involved a similar mixture of clinical assessment neuropsychology and imaging but I think what has changed from my perspective over the last ten to fifteen years is that it’s people have begun to involve patients not just as passive participants, but as people who have something important to contribute to the, to the earlier planning stages and subsequent review stages of research. So by wholehearted I meant involving not just as participants who get scanned or take tests but also as contributors to the, to the process by which research is planned.

Okay and what would you say the purpose of involvement is?

It has a number of purposes I think there are, there are questions which might not have occurred to the researchers but which will occur to the, maybe in the front of the minds of participants so it’s helpful to find out what it is that people with the condition are bothered by, we like to know the answer too, what are the questions that they would like to see answered by research. Then they may spot difficulties with the plan that has been developed and then the, once the research has begun to produce some data they may spot implications which weren’t so obvious to the researchers. So I think at least those three, well at least those three roles can be played by involving patients…

I guess it’s easier for somebody like me as research is very clinical because I’m used to trying to please customers really, I’m used to sitting in clinic with people and so PPI is in research a very small step from what I do clinically anyway. I guess that if you’re a bench researcher and your work is potentially very important and very valuable but much further from every day experience, every day clinical contact then, then PPI might, the relevance of PPI might appear less clear and the threat from PPI might be more alarming and because you might be afraid then you’re going to, you aren’t going to be able to pursue your, your particular precious ideas and you might, you may worry that it may be deflected in some other direction which you don’t fancy. Clearly there are, there are kinds of blue skies research which are well worth doing which researchers have a hunch would be useful and which most people aren't going to have a clue about so in PPI clearly shouldn't be allowed to rule research entirely I think, you know, it’s you want very wide diversity of kinds of research and kinds of project to be pursued. But nevertheless I would have thought most in the context of the regularity of clinical research projects it would be helpful to have that kind of input. 
 

No matter how well designed a study appears, Jim feels only people with experience of that condition can tell you if people are likely to agree to take part.

No matter how well designed a study appears, Jim feels only people with experience of that condition can tell you if people are likely to agree to take part.

Age at interview: 52
Sex: Male
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What for me is the sort of killer question as a lay reviewer is, if you have this condition or a member of your family had this condition would you consent to take part in the study that you're reviewing? And that’s a fantastic question because it goes right to the very heart of research, because there's no point in designing a study you can't recruit people to, and public involvement which about making sure that people do recruit to it. So it's almost the only question, almost the only question you need ask. It's always the killer question for me because a study might be phenomenally well designed, the statistics may have been terribly impressive and I can vaguely understand them. But actually, if the study isn't one that would be attractive to be involved in because either it's, the practicalities mean that it would be easy to take part as part of your care or, that, you know there are sort of other aspects that make it, you know you think it's safe; you can see the reason for doing it; it's relevant to your particular condition. If none of those things are true you're not going to want to take part.
 

Sabi argues involvement can be about both human rights and making research better.

Sabi argues involvement can be about both human rights and making research better.

Age at interview: 50
Sex: Female
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Yes, yes and we all bring our assumptions to that which also leads to that lack of conceptual clarity about what it is because there are so many things that PPI is to different people which is why it is important to articulate for each project, for each team what is PPI in our project because it could be because people have a right to be involved in their research - end of; in publicly funded research – end of, and we don’t need to justify it, we don’t need to demonstrate impact because it is a human right. I pay my taxes, I'm using services, I should be involved. OK that’s a view, you know, and I think that’s perfectly legitimate. How helpful it is I don’t know. But instrumental views would be around you know, you need to involve those who'll be most affected by the work and who will have experience of using the services in order to improve or ensure that the quality, the relevance, the rigor whatever, of the scientific endeavour is sound. So, you know, that’s a definition, that’s I think, is used by the NIHR and INVOLVE. [Telephone feedback] It's about quality relevance, utility, best value for money – all those sorts of arguments. There's the democratic argument, the normative argument I've already mentioned, and it's about, you know, the process of the research being overseen, being shaped by the end user if you like or the active citizen in terms of the tax payer.
As Sabi pointed out, there are arguments for involving both general members of the public, and patients who are directly affected by a particular bit of research. But it was also pointed out that involvement can have a wider impact - not just on specific pieces of research or tasks such as improving patient information leaflets, but on the whole mind-set of researchers - and that this could help generate new research areas. Some people such as Chris acknowledged it had taken them a while to realise how much they didn’t know.
 

A question from a parent sparked a whole new research area for Chris. Researchers need to acknowledge how little they know about what matters to people.

A question from a parent sparked a whole new research area for Chris. Researchers need to acknowledge how little they know about what matters to people.

Age at interview: 48
Sex: Male
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I mean our project's really interesting because it came from a parent of a child who has behavioural challenges and that father had had trouble getting an x-ray at the dentist for his child and wrote to us on an email and said, you know, "Is there any research about this?" And I know little more about dentists than going to the dentist myself and feeling anxious about that, so it wasn’t an area we knew anything about but we looked in, we followed our procedures for writing what we call our 'what's the evidence' summaries that appear on our website that are based on things that families have asked us about. 

So we looked in the usual sources of high level evidence, the Cochrane library and database of systematic reviews about x-rays and dentists and various words to describe disabled children, children with neurological conditions. And there is a literature out there about, you know, there's a Cochrane review about whether you should use anaesthetics for taking x-rays in children with challenging behaviour. And we also sent an email to our family faculty and said, you know, "Is this something other families have faced or anything else about oral care and dentistry?" And we got an overwhelming response; you know, families have significant challenges managing children's teeth either because the, you know, the neuro-disability affects, you know, self-care, tooth brushing or the dentist's surgery wasn’t accessible or they struggled to get someone who would give the time in an appropriate fashion to enable the oral examination to take place. So it seemed like a massive issue and we wrote our 'what's the evidence' summary and put it on our website and ticked the done box. But then we were approached by some dentists in [place name] who came across it and were really interested in it and that’s led to us having a working group where we have some dental researchers, childhood disability researchers and some parents in the room and that was a really successful meeting – lots of sharing of ideas and, you know, building potential research questions from the bottom up. 

…And do you think there's lots of things like that happen with PPI, that there’re these things you don’t expect to come out of it?

I think you need to be open to that. I think that, you know, going in that open way is really important you know, because if you knew what you were going to do why are you wasting everybody's time? I think the reason for engaging with people is because you don’t know stuff and it's surprising how much we don’t know when you really admit to yourself how much do I really know about this? You know, if we design the study in this way would that really be acceptable and might there be other ways and - I'm always amazed that our, that you know, the parents come back at me with different perceptions and viewpoints and I think it's probably just because I'm a bit dim. But I think anyone could have that openness and uncertainty about what the right thing to do is.
 

Involvement is primarily about social democracy and transparency for Sarah A.

Involvement is primarily about social democracy and transparency for Sarah A.

Age at interview: 32
Sex: Female
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But you’ve referred a couple of times to having this obligation to do PPI, we have this obligation. Where does the obligation come from?

So a basic one is we're tax payer funded. So we are a public body doing things on behalf of the public; using public money. And so I think in a, sort of, a social democratic sense, the public should have some access to that, some say in how that’s done. That is probably the primary one for me and I think as well we, I always think, you know, when you're writing your grant applications or something and you do your bit about how incredibly important this topic is to patients and how, if you do this project, patients will benefit and it will make patients’ lives better and patients’ are going to love this so much. And I think well, if you can't, then speak to some patients and explain to them the reason it's important and have them at least agree with that or, you know, offer their opinion, does that mean you're lying in that grant application? I suppose the alternative view is that you know better than those patients do - what they want. And I think possibly some researchers do think that. 

But for me, then it would come back again to kind of transparency and things. I think the obligation is to at least try to communicate these things to patients. They give them the opportunity to become involved. As I say, it's their money, it's their healthcare and if we're going to say that we do research for patient benefit I think a patient should be able to tell you what that benefit is, or agree with you that it's beneficial, I think. So I suppose that’s what I think.
Some researchers felt involvement was as much about values, including human rights and an ethical duty to give people a say, both patients who receive care and members of the tax-paying public, even if it is hard to demonstrate measurable impact on research (see ‘Measuring the impact of involvement’). Alison commented: ‘I think the benefits do outweigh the costs because the costs aren't actually that massive. I don’t think the benefits are that massive either, but on balance. Apart from anything you could always throw in the democratic imperative card which outweighs everything else so.’ Others felt this was not enough, and it was important to have a more specific goal in mind.
 

Involvement is primarily about social democracy and transparency for Sarah A.

Involvement is primarily about social democracy and transparency for Sarah A.

Age at interview: 32
Sex: Female
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But you’ve referred a couple of times to having this obligation to do PPI, we have this obligation. Where does the obligation come from?

So a basic one is we're tax payer funded. So we are a public body doing things on behalf of the public; using public money. And so I think in a, sort of, a social democratic sense, the public should have some access to that, some say in how that’s done. That is probably the primary one for me and I think as well we, I always think, you know, when you're writing your grant applications or something and you do your bit about how incredibly important this topic is to patients and how, if you do this project, patients will benefit and it will make patients’ lives better and patients’ are going to love this so much. And I think well, if you can't, then speak to some patients and explain to them the reason it's important and have them at least agree with that or, you know, offer their opinion, does that mean you're lying in that grant application? I suppose the alternative view is that you know better than those patients do - what they want. And I think possibly some researchers do think that. 

But for me, then it would come back again to kind of transparency and things. I think the obligation is to at least try to communicate these things to patients. They give them the opportunity to become involved. As I say, it's their money, it's their healthcare and if we're going to say that we do research for patient benefit I think a patient should be able to tell you what that benefit is, or agree with you that it's beneficial, I think. So I suppose that’s what I think.
 

Tina questions why we don’t involve children and people with learning difficulties directly in research, rather than asking their family or professionals. It’s a matter of social justice.

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Tina questions why we don’t involve children and people with learning difficulties directly in research, rather than asking their family or professionals. It’s a matter of social justice.

Age at interview: 56
Sex: Female
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I think the outcome of working in that participatory way is massive and it's massive on a number of levels. And for me, it starts off – there's a social justice element to it, there definitely is. I mean, for years people with learning difficulties were never asked about their own lives and they still aren't very often. So we'd ask their mothers and their fathers or their doctors, but we never asked them and honestly it's their lives – why did we not do that? But actually you can see that perpetuated in other kinds of research. We don’t ask the people, children are the same. I mean it's much better now in the last twenty years. Children – everybody asks children what they think but years before they weren't even asked. So there is a social justice, the voice of people because if your voice is never heard then decisions are made that don’t include your perspective and you become even more alienated. And the inclusive research agenda for people with learning disabilities has been enormously influential I think. But it's not just people with learning difficulties and getting people's voices heard, so there's that whole social justice element of it. If you're not heard you don’t have any power, so it's a kind of power thing.
 

Involvement is more than engagement. Vanessa is working to convince sceptics it makes a real difference to research, and isn’t just about human rights.

Involvement is more than engagement. Vanessa is working to convince sceptics it makes a real difference to research, and isn’t just about human rights.

Age at interview: 42
Sex: Female
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I feel that public involvement is something a lot closer to actually involvement in the research process. So I think the distinction is there's engagement which is important but at one level isn’t asking that much of the public whereas involvement is asking for an awful lot more – a lot more time commitment and a lot more interface within academic teams and within a programme. So it's not just reading an article or maybe Tweeting and making a response. It's actually coming to meetings; it's commenting on things; it's getting involved, it's just a – they're completely different activities.

And the challenge or the interesting thing here is understanding why we, how they relate to each other, making sure that they do. And obviously for academics and for research teams is working out who is best placed to do all of this because it's been quite a challenge to get us to a point where PPI is really quite substantially embedded now. And people do have to fill in on their form what they're doing and there is still a sense that some of that is quite tokenistic. And there is great scepticism out there and it is difficult. And I know some people find it quite hard to work out is this going to help me or is this just going to cost me time? Is this just a distraction and it's time I don’t have, and it's money that I could spend differently. So the case for PPI is still being made. 

And I suppose organisations like us are trying to assist with that by showing through the evidence base why it's helpful. It's not just being evangelical and saying it's important. It’s not only saying it's important on a human rights basis; you should involve the people because it's their lives that you're trying to change. But we're also trying to show that actually it's because it will help you and it will deliver better quality research – more focused - and we have really seen the benefits and feel that our studies have improved for it. 
The danger of a tick-box approach to involvement, just because it is ‘politically correct’ or required by funders, was a common concern. Some felt involvement did not always make sense and could potentially undermine researchers. (See also ‘Doubts and worries and debates about involvement’ and ‘Colleagues’ attitudes to patient and public involvement’).
 

The assumption that researchers are ‘robotic, unfeeling people’ unless they have patient involvement can feel a bit insulting.

The assumption that researchers are ‘robotic, unfeeling people’ unless they have patient involvement can feel a bit insulting.

Age at interview: 32
Sex: Female
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And there are people who have negative experiences and I think that can, you know, that goes back to I think the more basic thing of, it can be scary because you think, 'Am I just going to sit here and get told off by this group of patients who think that what I'm doing is rubbish?’ And, you know, ‘I've been, I've been working on this for nine years now and I don’t want to be told that I don’t understand things.' And, you know. And that I think is sometimes dangerous, I think sometimes as a kind of an implicit and sometimes actually explicit kind of storyline in this idea that we need PPI because actually we're all these kind of you know, robotic, unfeeling people who don’t understand what patients go through. And I think, I wonder sometimes if that’s a little bit of the friction as well, there's this kind of so what, you know, I've spoken to hundreds of patients; I spend all my time, you know, exploring this and exploring the impact on them, and you're telling me that I don’t know anything about it. And that, you know, I wonder if that’s, but it's almost a bit of a professional insult and a bit of a personal insult I think as well. So yeah [laughs]. 
 

Anne feels frustrated that involvement is so ‘trendy’ and you can’t criticise it. To be a good researcher takes years of training.

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Anne feels frustrated that involvement is so ‘trendy’ and you can’t criticise it. To be a good researcher takes years of training.

Age at interview: 32
Sex: Female
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It's a nightmare. It's a complete nightmare because I've got to be really careful as to what I say and do. And as well like PPI's really trendy at the minute and I'm not saying it hasn’t got a place, but it's not considered very PC if you fundamental – you know like, it's like, "Oh brave new world." Patients should be like co-applicants on bids – actually I do agree with that in some respects, but patients should be co-applicants on bids; patients should be researchers – why don’t we just [effing] bring a load of patients to come and sit round my desk? Why did I bother doing a PhD? Do you know what I mean? So it's like really difficult because these people are quite capable people, but they’ve not had the training, they’ve not worked as a researcher. You know everyone knows that to be a researcher you’ve got to cut your teeth, you’ve got to do at least three degrees: you’ve got to do an under-graduate, masters and PhD. You’ve got to, you know, you cut your teeth in your first research assistantship where you're closely monitored and evaluated. And then at the opposite end of the spectrum they just want to bring in these people who've got nothing to do with anything and let them loose on our study – ill patients at the bedside. It's really difficult for me so I've got to kind of be really careful how I manage it.

PPI is held up as this thing, as a shining beacon we must aspire to. It is essentially seen as a hundred percent positive; there is nothing bad about it. You know, that’s what it's seen as. And it's like why are we not critiquing the bad things about it? That’s, and I think your research might hopefully draw out some of these things that shows that it's not always this amazing thing and why are we not critiquing it more, essentially.
There was agreement that there was no point in doing it badly, for example not listening and never acting on patients’ input, and that this could be unethical and damaging. It was also pointed out that researchers need to be clear why they are doing it in each study and what their expectations are. At the same time, some researchers argued that any involvement is better than none.
 

Felix argues it’s unethical to do involvement badly, without planning what you expect from it for each project.

Felix argues it’s unethical to do involvement badly, without planning what you expect from it for each project.

Age at interview: 36
Sex: Male
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That also means and I think that if you are having a risk of creating lots of negative impacts both on the members of the public but also on yourself as a researcher or a project team, there is a certain responsibility and a risk to consider. And I would say if you're not fully committed to making that work and a central part of any research, then it's an unethical choice that you're doing. So I'm against, I would advocate against any public involvement that hasn’t got a serious and, you know, a very early, also an early stage of planning, collaborative planning on what the values and the expectations are with regard to this project, and also, you know, identifying the areas of impact which you want to have a, you know, an almost a negotiation. So I would say, you know, any research proposal that hasn’t done this before they’ve put in a grant and it should be categorically stopped, you know, by the commissioners and the funders because it is unethical to do bad public involvement.
 

Valerie does not believe there is ‘only one fixed thing that is good PPI’. Any kind of involvement is better than none, as long as you are clear with people what to expect.

Valerie does not believe there is ‘only one fixed thing that is good PPI’. Any kind of involvement is better than none, as long as you are clear with people what to expect.

Age at interview: 39
Sex: Female
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But I don’t think that there is only one fixed thing that is good PPI and I think there are perfectly valid situations where any level of asking of consultation or is better than nothing. So what we try to do here for what you might call full PPI is to have the whole research kind of, it's embedded in the research we do so from the generation of the idea all the way through the design. But, yeah I don’t think there's any one fixed in my mind, there's no one fixed thing that constitutes good what is PPI. I think what's really important is that whatever you're offering people know what you're offering and what influence they can have. And you know I would have no qualms about emailing our family faculty and saying, “Can you read this, it's written already, does it make sense?” And that’s kind of like a really, a fairly kind of old school, if you want to read this information leaflet and tell me if you can read it kind of approach, and that’s fine because if they know that that’s the only influence they're going to have, to my mind then that’s OK but it's about, it's about the horrible phrase, 'managing expectations'. But about what the people are, you're asking people to put in and what influence they're going to have and what they're going to get out of it I think if you're kind of clear on that with everyone. That’s what it means.
Defining the boundaries of involvement

Our sample included some qualitative researchers, particularly researchers who conduct interview studies with patients about their experiences. There was some frustration that qualitative research and involvement sometimes get confused with each other – though there is also some recognition of an overlap. An important distinction is that talking to patients for involvement purposes does not need ethical approval – whereas qualitative research does. It is also important to note that being interviewed about personal health experiences is not the same as being asked to comment on aspects of the research study itself – though such interviews can sometimes suggest research questions or priorities.
 

Suzanne reflects on the differences between qualitative research with patients and patient involvement in research.

Suzanne reflects on the differences between qualitative research with patients and patient involvement in research.

Age at interview: 40
Sex: Female
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One of the things that you mentioned a couple of times was about qualitative research and PPI and involvement.

Yes, yeah, yeah

And kind of the blurred lines or whatever. 

Yeah

Can you talk a little bit about that?

Yeah it's an interesting one because we're thinking about this quite a lot lately because a lot of the work I've done has been asking people's views on things. And you know their experience of things and how, you know, and looking at how that might improve their healthcare. And a lot of work hasn’t been like that as well so it's kind of -But I think the difference is the time to change to something. So, you know I've done, you know quite a lot of work in the past, you know, sort of looking at, I don’t know, evaluating services and things like that and - But actually I'm not convinced of whether anything's happened on the basis of it you know, so it's kind of that commitment to act which I don’t think is always there. So that was one kind of parallel. So, you know it is kind of asking, you know being open and asking people what they think but also, you know you can't always promise that something's going to happen on the basis of it but it's kind of. And you can't always do that with involvement as well but it's sort of giving, I don’t know, it's the kind of whether you consider involvement being asking for views or whether involvement is involvement in decision making. It ties into all of that again doesn’t it – what do you mean by it? You know and obviously, you know qualitative research you know the onus is on the person who you're talking to and you're trying to understand how they're interpreting the world and all of that. 

And you are trying to do that I guess with, you know, with PPI as well. But I don’t think somebody goes away and thinks about what it all means and, you know, you know tries to, you know make some recommendations on the basis of it with PPI, so it's kind of. There's probably only room for skills for the qualitative skill set within PPI for that reason, but it's thinking about, you know, how the mind-set I guess is different as well because you're sort of; you’re very much perhaps focused on a goal if you're involving somebody so you're, you know, you're trying to, I don’t know read about a guideline or something like that whereas, you know, you’ve been much more exploratory in finding, you know broadly trying to find out what people think about something because not a lot's known about something so. Yeah there's lots of. It's an interesting one isn’t it but it's lots of blurred lines and, you know, I've had people say, "Oh you do that for years, you’ve done that for years," and you think, 'Actually I don’t,' or you know, sometimes we review the PPI element of Research for Patient Benefit grants here before like a peer review before it goes out. And you know it's interesting the amount of qualitative proposals who kind of don’t incorporate any PPI because they think they’ve done it already so, it's quite, that’s quite interesting.
 

For Alison, the boundary between involvement and qualitative research is blurred. Some formal involvement structures can feel too much like a tick-box exercise.

For Alison, the boundary between involvement and qualitative research is blurred. Some formal involvement structures can feel too much like a tick-box exercise.

Age at interview: 47
Sex: Female
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And so can you tell me a little bit about your experience and involvement. So sort of when you first started involving people and how that came about?

I think for qualitative researcher this is quite a difficult question to answer because, going back to when I did my PhD which is quite a long time ago now – it's in the nineties, because a large part of it was qualitative I was working with people. Even though it wasn’t formally labelled as service user involvement or participation, the very nature of the research actually involved people. And because the topic was to do with disability and in part about what is the nature of disability as a social construct – you know it's quite political. So there's lots of stuff in there and lots of stuff that was influencing me about sort of disability rights and the whole agenda of ‘nothing about us without us’, which I notice has now been taken up by David Cameron, but I mean that’s, originally it was a disability right so I think, and of course it's highly relevant. It's the kind of work that DIPEx does, the user involvement stuff. So no because it was a PhD it wasn’t, it was a very sort of personal thing for me, but during the course of doing that I, as well as sort of talking to people and gathering personal stories and, you know, doing lots of going round spending time with people, I then did kind of feedback to the, or had little meetings with the people whose stories I'd been using and writing up and sort of said, "Well this is how I've interpreted what you said and what do you think of this and does this resonate with you?" 

So that was, it was part of the research process, integral part of the research process rather than being a separate phase of user involvement. But actually that’s what it was. And this is something that I've been aware of ever since that there is this kind of interesting blurring particularly when you're doing the qualitative work between formal user involvement structures and what is the research process. So that was a long, long time ago. And then I went away and did loads of other types of work and have been back doing university or academic style research for about eight years. 

And during that time there has been an increasing emphasis on formally involving service users. And you know the requirements coming out of funders and so on – you have to show that you're doing it. But I have sometimes have anxieties that it's more of a tick box than anything else. 
 

In Tina’s view, participatory action research is an effective and creative way to do PPI, but she argues there is little awareness of it and very basic understanding of what PPI is for.

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In Tina’s view, participatory action research is an effective and creative way to do PPI, but she argues there is little awareness of it and very basic understanding of what PPI is for.

Age at interview: 56
Sex: Female
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I'm not saying I want to get rid of all the other kinds of research – not at all. I want recognition for the purpose of participatory research that people find through understanding that in the process of understanding. We have people still in Trusts - and I know this because we were asked by our, what was then the CLRN, to do a bit of work into what people in the region, what people with responsibility for research understood about PPI, even that was the thing. 

There was an amazing range of knowledge, most of it was at the very basic end and it wasn’t that people weren't interested, because sometimes people really struggled. We'd go to see people whose responsibility was for developing PPI in research in Trusts and you'd say, "Well what's it for?" And they'd say, "Well we want to get more people involved in research; more people into trials de de de." And then you'd say – “What else?” Well, you'd struggle in the interview and in the end you'd say, "Well I'll give you some examples. Do you ever do anything like that?" They go, "Cor, no, that’s really interesting. What else?" And you'd end up having a conversation with them and they'd be really interested in it [participation research]. They had not had any exposure to it so how do they know, how do they know? So that whole process of just enabling people to have discussions about what research is for, why you might do it, the different ways you can do it and including doing it in a participatory manner.
We also talked to some clinical researchers who felt talking to their own patients and research participants was a form of involvement, while others disagreed.
 

As a clinical researcher, Carl feels he has always involved patients. It is different for researchers who have no patient contact.

As a clinical researcher, Carl feels he has always involved patients. It is different for researchers who have no patient contact.

Age at interview: 46
Sex: Male
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When did you start to involve patients and members of the public in your work?

Well look I think that’s. I mean when did I start? Probably twenty years ago when I first came to medical school. I decided to be a doctor and a clinician because patients were around and the public were around with diseases and health problems. And, throughout my clinical training I've always involved patients, so the idea I didn’t is nonsense. And, if you think about it you have to because how would identify where there's a clinical issue, where there's a problem? What makes a difference to a patient? You have to do that with relation to patients. So, I think in some ways, if you're a clinician, it's much easier to say you're involving patients all the time. And so, on Sunday I worked in the out of hours, I saw twenty patients. Twenty patients with twenty different problems, twenty issues, twenty different diagnoses, twenty different anxieties, concerns, information needs. 

Some of them were really interesting and would be used potentially going forward. It's just that what's happened is there's been a realisation that there are many researchers who are completely disconnected from the patient focus. And it's practically impossible to do research if you're not connected to patients, and near to patients, because you're going to do something that might be academically interesting. Academically interesting to an academic audience, but of no value to patient care. 
 

Pam thinks clinicians need to go beyond the clinic setting to hear from patients. They will learn different things.

Pam thinks clinicians need to go beyond the clinic setting to hear from patients. They will learn different things.

Age at interview: 54
Sex: Female
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So I think PPI is, incorporates being a member say of a funding panel. So you would get members of the public being on specific funding streams like Research for Patient Benefit and they’d sit, and it seems to me that that is a legitimate role as a member of the public and a lay person that doesn’t require experiential knowledge of a particular health condition. And it’s more to do with governance and yeah just, just that person plays a particular role as a non-expert. Whereas I think in other instances it’s really important to get people with first-hand experience. And I think what I’ve found is that sometimes clinicians, for example with the bladder and bowel project, clinicians were only used to interacting with people as patients in the clinic. And so it was a real eye-opener for them to sit in a room and do some PPI with women who were able to talk about the impact on their sex life on going swimming and things that they perhaps might not have revealed in the clinic or that their consultant wouldn’t have considered. So sometimes, you know, it varies according to the purpose of the PPI I think.
Involvement may also be a way for people to acquire new skills and (especially in mental health research) to aid their recovery. Vanessa and Felix argued this was an important goal or outcome in its own right; Hayley felt that although this could be a valuable by-product of involvement it was not the main purpose. (In our companion site on patient and public experiences of involvement, we look at the personal benefits involvement can bring to individuals).
 

For Vanessa, the benefit for individuals who get involved is as important as their impact on research quality.

For Vanessa, the benefit for individuals who get involved is as important as their impact on research quality.

Age at interview: 42
Sex: Female
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When you look at a number of people that we're working with lived experience that we're employing that are on our payroll – that, and the journey that they come from and some, particularly where I used to, where I worked before there was one person who when we first started, you know I don’t recognise him now from where he started and he's been on this journey with research and telling his story and building up his skills and building up his confidence and now works full-time. And yeah has come on an amazing journey and it started with somebody saying, "Why don’t you get involved in research?" And skilling people up, skilling him up and building his confidence to speak out and collect interview data and being involved in writing. And that journey is what you hope we can escalate on a much bigger scale. 

So it's not just about the quality of the research that’s changed; it's also about the fact that you are helping recovery journeys for individuals with mental health problems and their families and providing something else in their life and building up their skill base, etc. and their confidence in doing it. So there are two benefits in this – benefits for the individual, benefits for me personally and the team personally because we get an awful lot out of working with this group.

And then obviously our quality of the research as well.
 

Felix suggests that the most important impacts are on people and relationships. Making changes to a specific piece of research is secondary.

Felix suggests that the most important impacts are on people and relationships. Making changes to a specific piece of research is secondary.

Age at interview: 36
Sex: Male
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Another great insight from the project was probably for me, an eye-opener, was that most of the impacts are on people rather than on the actual research. So I think that’s something that’s probably mis, not misunderstood, but not known about or taken in, you know, taken in account of you know; this public involvement is about the people so that’s all the people that, you know, all the stakeholders within a research team and the people that you enrol to collaborate with. 

So, you know, and that’s the main thing and that’s also where most of the positive and the negative impacts happen. And then the, almost a secondary part is about the actual impact on the actual research and this is based on our review of the literatures. So I think, you know, when, you know, I would tell to anyone who engages in it it's more about, you know, it's going to challenge you as a researcher and it's going to challenge the members of the public because everyone has different values, expectations and impacts that they're interested in. But it's primarily about that interaction and this is where you're creating impacts and not the actual research. So and that’s, you know, so if, if you take that down into numbers, you know, so sixty, impact on research, sixty different impacts on the various phases of the research and it's a hundred and twenty impacts reported on the actual people involved. So that’s twice, you know, it's twice as much, twice, oh you know, more important – not more important but you'll create more impact on the people and on the research. 
 

The personal benefits of involvement for the people who get involved are important but this should not be the main goal.

The personal benefits of involvement for the people who get involved are important but this should not be the main goal.

Age at interview: 30
Sex: Female
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And my research dissertation, I interviewed some children and did some surveys with staff who had been involved with the forum structure, to kind of find out from them what they thought the impacts of involving the children in the forum were from both the children and stakeholders and from the staff's ideas. So that was really interesting for me because I think for the first time I was thinking about the job in a more sort of, involvement in a more sort of academic way and thinking, 'OK so everyone thinks that it's a good idea and people are talking about there are some positives and this is why we do it.' But it was interesting for me to kind of look at how people kind of frame involvement in local authority in the first place.

And it's very much about the agency of the child and the fact that they can have a say. And then when I kind of talked to both the children and the staff actually about, so what did you get out of it at the end, it was very much more framed around the child as a developing child and the fact that this was very good for them because they learned all these skills and knowledge. And of course what I found was a little bit missing from the conversation was what impact they'd sometimes had on policy and on the local services. So people went into it with the best possible intentions but I kind of felt, ooh somewhere here the message has got lost or, there's been some reasons why they can't have as much impact which again made me start to think about some of the limitations to the involvement.
Most people we talked to were clear about the difference between engagement and involvement, as Jim described, however, a few people found the terms confusing or used them interchangeably.
 

Jim explains that engagement is a one-way process of giving information to people, whereas involvement is working with them. But engagement can lead to involvement.

Jim explains that engagement is a one-way process of giving information to people, whereas involvement is working with them. But engagement can lead to involvement.

Age at interview: 52
Sex: Male
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Can you tell me what you consider the difference between involvement and engagement?

Well I'd have said a very high level. Engagement is a more of a one way process of researchers engaged with the public to tell them what they're doing and tell them what the results of what they were doing is, and there isn't necessarily a lot coming back. There might be comments coming back or questions but actually it's a, it's more of a dissemination and a dissemination process, so a raising awareness type of thing. Whereas involvement is actually where you're working in partnership with patients and the public, so it's the doing with, or by, patients and the public. But there is a spectrum in-between it so, there is a sort of continuum of involvement which will start with engagement and actually, engagement can very soon become involvement when you then, the one way process starts to become a two way process and then actually it moves quite steadily on from there. But broadly speaking engagement is a sort of giving of information and involvement is a working with and by.
The question of whether user-led research counts as involvement is ‘one of those grey areas’, as Vanessa put it. The INVOLVE definition includes ‘research done by members of the public’, and it is certainly a growing area, especially in mental health research, where service users are often involved in data collection and sometimes also in analysis. Valerie argued that just because someone has learnt to do some analysis doesn’t stop them being a parent of a disabled child. But some researchers such as Sabi had doubts about whether this was still ‘involvement’ or really just ‘research’, despite official definitions.
 

We owe it to people who get involved to help them develop skills. It doesn’t mean they lose their carers’ perspective or their experience becomes less valid.

We owe it to people who get involved to help them develop skills. It doesn’t mean they lose their carers’ perspective or their experience becomes less valid.

Age at interview: 39
Sex: Female
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I think the expertise one is an interesting one but you can see it from both sides obviously. It's a really, there are some arguments that are just focusing on people's complete naïve experiences. I think the way I've started to think about it is that actually the expertise that people gain from being part of PPI is part of what we should be giving them. You know, it should be, it's kind of a one sided relationship, well it's not, I mean that’s the point that parents, parents make to us that they do get something out of it; it's not just about contributing to research, they get something out of being part of it and I think that’s an important part of the whole expertise argument that it, if people want to be involved in a systematic review and you give them some training on that then they get something out of that which is useful to them in terms of confidence, skills, you know, all manner of things. So from a, from a personal development point of view I think, well, you know, it's brilliant, it's fantastic. If somebody wants to develop their knowledge base and, as a result, can participate more in some of the, some of the less accessible areas of research, then I think that’s fantastic. I, again, do see the point that sometimes I know for a fact some of our parents know a whole lot more about certain elements of conditions and, and not just from experience, from the fact they attend a lot of conferences. 

So I think it really depends on what your purpose is, you know, what are you trying to do? I'm trying to involve some parents of disabled children. This person is a parent of a disabled child, he has all of that experience and the fact that she may be, she may have learnt how to, how to do a bit of thematic analysis so that she can be involved more doesn’t take away from that experience any more than, you know, me being a runner takes away from, you know, something else. It just, yeah, so I don’t think we have the right to say to people, "We want you to come and be involved in our research but we don’t you to know anything about it, that’s our domain, no." So yeah there you go, that’s pretty much it [laughs]. That’s pretty much my views on it.
 

Some users involved in Vanessa’s mental health studies want to be seen as just ‘researchers’ and not ‘service user researchers’.

Some users involved in Vanessa’s mental health studies want to be seen as just ‘researchers’ and not ‘service user researchers’.

Age at interview: 42
Sex: Female
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Obviously we all use our experience in everything we do and you can't completely lose any of your identities but essentially there are some people that wear it on their sleeve and other people that don’t. 

And I think within our organisation we have some posts that explicitly say, "You have to be a mental health service user to have this job. We won't be, we can't appoint you if you don’t." And we have had the discussion with some people, not currently people that are working with us but people that have been advising us and various different people that we engage with and finding out from other teams [coughs]. So we've had conversations, we had a day where we brought people with lived experience together that have got substantial roles in terms of research and asked them about some of the challenges. And one of the things they said is that sometimes it's really uncomfortable to have a service user researcher on your name badge: "I just want to be a researcher. I'm the same as everybody else here. I happen to be that too and I'm quite happy to talk about it and use that experience but why should I be singled out as different to the person next to me, they're a researcher." 
 

User-led data collection and analysis can bring great richness to a research project, but Sabi argues it’s research, not patient involvement.

User-led data collection and analysis can bring great richness to a research project, but Sabi argues it’s research, not patient involvement.

Age at interview: 50
Sex: Female
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You know, I think there's so many instances that I've seen reported or I've attended conferences where you have, you have patients and carers being involved in data collection and data analysis and the insight that that is yielded. The richness it's brought to the project, the, you know, fantastic work creative work that individual researchers have been able to facilitate patients and carers to take part in. I think, you know, that’s fantastic but I don’t think that’s PPI. I think that is something else and I think that’s where the conceptual fuzziness is a problem. I can't probably articulate it well enough to explain very clearly about where the line is between, you know, patient-led, user-led research and PPI. I know that, you know, it used to be user-led research was part of the spectrum, if you like, of PPI. I don’t think that’s right, I don’t think its PPI. PPI is about involvement and engagement. 

I think that, you know, especially with, in, in sensitive research areas or where you're looking at very specific communities like, say the deaf community – why wouldn’t you use deaf researchers to be collecting data and be involved in the analysis? You know, people who are working in the margins of society – say sex workers – you know, how helpful would it be to work with sex workers, develop their skills and involve them in data collection and data analysis. I think that would bring incredible richness. I'm just not sure that those are involvement activities – they are methodological issues around who is best placed. So you might have PPI to help you identify that a particular project would probably benefit from researchers who have particular backgrounds who come with particular experience that is shared with the targets, the target sample if you like, the target group. But it's a methodological issue, it's not an issue of public engagement, public involvement.
See also ‘Reasons for involving people’, ‘Researchers’ examples of the value and impact of involvement’ and ‘Doubts, worries and debates about involvement’.

*Foreword in Staley, K. (2009) Exploring Impact: public involvement in NHS, public health and social care research. INVOLVE, Eastleigh.

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