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Researchers' experiences of patient & public involvement

Payment, expenses and funding issues in patient and public involvement

Current INVOLVE guidance is that people who get involved in research should be offered payment for their time, even if they choose not to accept it, as well as reimbursement for travel, accommodation and any other expenses such as respite or child care. Researchers we talked to emphasised the importance of making sure this is properly costed in all grant applications, and that funders accepted it as a legitimate cost. Several talked about the difficulty of funding involvement at the grant development stage; some had used local NIHR Research Design Service funding support to help (see also Pam later). Determining the ‘right’ level of payment to include was a common worry.

 

Fiona describes working out costs of involvement to put in grant applications and recommends the INVOLVE website for help.

Fiona describes working out costs of involvement to put in grant applications and recommends the INVOLVE website for help.

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We have to hold things on conference calls and if you know that you're going to a meeting that they're likely to be at then you've got, you can factor in some face-to-face meetings there but with the grant applications now I would always cost in for at least one face-to-face meeting a year. And on top of that you've got to look at where people are coming from because if they've got disabilities you need to factor in that they might need to travel up a day in advance so there's hotel accommodation to add in on top of that. It's good to talk to the individuals to find out if they would like payment – either payment for the full day or half a day or an hourly rate or whatever. Not everybody wants that but certainly the, I suppose – I can't even say it's the younger ones that do want payment because it, actually that doesn't follow; there are older ones that would like to have a payment for their time as well – and we just follow the National Guidelines. There's a very nice paper on INVOLVE's website about, you know, what sort of payments you should consider. And then once we've actually worked it out – we have a very good research business and support office here at the university that help with costings – but once we've actually worked them up they, we ask for those to be checked by our user group first of all before they're actually submitted with the grant just to make sure that we haven't – well we never overdo it – but to make sure that we haven't underdone it. 
 

Rebecca recommends applying for Research Design Service support so you can pay people for involvement in designing a new study

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Rebecca recommends applying for Research Design Service support so you can pay people for involvement in designing a new study

Age at interview: 31
Sex: Female
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And also knowing then, there were skills, grant writing – that’s a huge one – grant writing not only for the actual grants, but also things like PPI bursaries, like the Research Design Service PPI bursary. It's really great at helping get people involved early because you can actually give some payment for their time which is, which is fundamental but, it's also really difficult if you're on a project which maybe, or you're trying to do something that’s a bit different to your work so you can't find that money in your project budget. So that helps to get people involved early and, before at the very starting points of an idea. 
 

Sarah agrees paying people is an important principle, but wants firmer national guidance on what to pay and how to cost this in grant proposals. Slow payment processes can feel disrespectful.

Sarah agrees paying people is an important principle, but wants firmer national guidance on what to pay and how to cost this in grant proposals. Slow payment processes can feel disrespectful.

Age at interview: 32
Sex: Female
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I think I said at the start, it's one of the most, sort of, sensitive issues, it comes up a lot. I mean in terms of what I think of payment, I know there's a, I think the argument is that, if we are asking them to make contributions that require a lot of effort and energy, and input, then there should be some form of payment for that, payment for their time. I know some, I think, I know one of a group on a charity, I think it's an Alzheimer's charity, and the lady I was talking to there, she was saying they actually chose to not get payments at all because they said, you know "We're doing it for the charity." I think it's a thorny issue this point of, which points of being a volunteer moves over into being a paid contributor to a project. But again, personally, I think if, I think if we really want sort of genuine involvement and insight from people then it has to be sustainable and it has to be supported financially. 

I think there's a lack of guidance on what number, you know, what figure you put on it. Probably the question I get asked most often by people in the department is, you know, “what do I pay them?” You know, is it fifty pounds, is it twenty pounds and there seems to be a reluctance, an understandable reluctance I guess, to put a number on that but it does, I think, then leave it essentially at the mercy of what happens locally and at the mercy of, people always go for, you know, the smallest number that they can and if they find out that someone in, you know, the next university only pays ten pounds an hour, then they’ll go with ten pounds an hour. I think it's a really complicated one and I know it's, I think. I think for the PPI members I think, I think that they feel it's disrespectful when they're not given what they would view as appropriate sort of compensation. And an issue we have here is just the speed with which they get, you know, the refunds. 

There's a thing in universities you wait, you know, six months to get your expenses processed or something and I think for, you know, the PPI partners who are saying, "Well I'm waiting six months later, I still haven’t been paid for this." It feels disrespectful I think. But then, you know, that becomes a struggle for us because we don’t have any sway over finance [laughs] to say, "Please pay these people quicker." So I don’t know, I think the finance one is a really, really complicated one.

And I do think it's one where, I think there is a need for kind of leadership from above whether that’s, you know, the NIHR saying, "These are the figures that we recommend; this is the policy we recommend about finance," or, as we're trying to do here, we're trying to get kind of a top-down, like a faculty wide kind of strategy that says, “This is the amount that, kind of, we recommend that people get, this is how we recommend you pay people.” So recommending kind of cash on the day rather than expenses if you can and things like that. But yeah it's a pain in the arse, it really is [laughs] – for us and for them, I think it's a real pain so.
While there was agreement that paying people for involvement was nationally recommended policy, there were some concerns about whether it was a good idea. Catherine suggested some people might just ‘see it as an easy way to make money… There's a risk that you'll get people who maybe aren’t that interested in helping with research but just want to make the money.’ However, most researchers we talked to felt there was little evidence of this. In practice, people may choose not to accept it, but most agreed it was better to cost it in and offer it than not. Stuart was one of many who felt it was simply equal recognition of skills: ‘You can't do research without statisticians, you can’t do research properly without members of the public, and in the same way you pay for statistics you pay for getting this involvement.’
 

For Chris paying people for their time (if resources are available) is an important acknowledgement, even though many people would do it anyway.

For Chris paying people for their time (if resources are available) is an important acknowledgement, even though many people would do it anyway.

Age at interview: 48
Sex: Male
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From my perspective, I'm being paid to be in a room and having a discussion and I'm involving that person as an expert in, whose insights I don’t have as the researcher, so I feel very much in the camp of acknowledging, acknowledging them where resources are available. So I think the level of reimbursement depends on what resources are available. We had a very interesting exchange in a meeting recently where there were parents and some researchers and some parents gave a presentation about their experience of being involved and there was an ensuing discussion and one of the researchers – not from this organisation – but he said, "Well, you know, the system's difficult because we can't pay," I'm not sure if he used that word but there was this acknowledgement payment before you got the research funded. 

Now we're in a fortunate position being part of the CLAHRC and because of our charitable funding that we can provide that acknowledgement even before we get to the grant. But one of the parents in that discussion said that they wouldn’t be worried, they'd be happy to be involved without any financial acknowledgement if there wasn’t a resource available, if it was approached respectfully and transparently. You know, obviously if some funding would enable acknowledgement then that would be great. But to assume that they wouldn’t do it or that there would be some rigidity around it would be wrong. You know that parents are very happy to come along and do some of the work that we do together without the acknowledgement if we didn’t have the funding. But if we got the funding then I think it's right and proper that we should acknowledge them.
 

From her experience Sarah does not believe anyone would seriously be motivated to get involved just because of money.

From her experience Sarah does not believe anyone would seriously be motivated to get involved just because of money.

Age at interview: 32
Sex: Female
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I personally, and this is hard, I feel like well if they say that then I don’t want to. Personally I think the amounts that we offer and the comparison - demands that are placed on people even if it's just sitting through a really boring two hour meeting about a trial. I don’t think people are going to put themselves forward for that just for that money. I don’t see that happening personally. You know I, and particularly if it's, you know, people talking about their health problems and stuff, I feel like, maybe I've been lucky – in my experience people who've come into PPI they’ve had a genuine interest, you know, they’ve been passionate about some aspect either about an illness or about a research study and, you know, whether it's worked out well in other ways, it's felt to me very genuine why they’ve come, so I've never experienced that so that’s kind of news to me I must admit. And what, oh the value for money? Mm I mean I suppose that depends again, it goes back to what do you mean by better research? If we're giving these people this amount per hour to attend the meetings and make the research better what does that mean? I don’t know, do people use that a reason kind of like they're saying, "Oh I don’t think its value for money".
 

Marian feels involvement must be costed properly in all grants – though recently she had trouble persuading panel members to claim even travel expenses.

Marian feels involvement must be costed properly in all grants – though recently she had trouble persuading panel members to claim even travel expenses.

Age at interview: 46
Sex: Female
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So clearly it's being under-costed, under the amount of funding required is under-recognised. Although I had the exact opposite challenge in the parental advisory group meeting that we had a couple of months ago. I could not get them to give me travel, they would not let me pay for their travel off the grant because, as far as they were concerned we were providing a venue and lunch and it was a way that they, who had by and large been talking to each other over the internet or via the Facebook group or through the support group, could meet together. And so what we were providing them with the day to meet together and, as far as they were concerned they should be paying for their travel. They brought the children with them because – I hadn’t told you about that – so they brought the children with them and that was brilliant. So I have to give credit to my clinical research fellow who, you know, we talked about it but we thought, well if the children come too we're much more likely to get the mums and dads. And it was great, it was really great. You know it actually allowed almost more freedom because it didn’t matter what racket was going on. So that was really good and so credit to [name] for suggesting that.

But so they weren't paying for childcare, they didn’t want to claim for their travel and when you mentioned that, you know, you’ve got INVOLVE guidance that you're allowed three hundred pounds a day it was like alien, alien concept. You know which is lovely but actually that made me feel a bit bad because. Anyway I think we have persuaded quite a number of them to at least claim for their travel. But interesting that what INVOLVE says and what people feel is perhaps at odds.
 

In one of Felix’s studies, the patients involved chose to accept lower payments so they could meet more often within the same budget.

In one of Felix’s studies, the patients involved chose to accept lower payments so they could meet more often within the same budget.

Age at interview: 36
Sex: Male
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You sort of were talking about costing it into funding proposals and then in your message you said that people should be offered the opportunity to be reimbursed if they want.

Yeah I think so and also because, and we've done that in, we've done that in projects where, because you could then argue well, you know, if you want to be, because we, I think we said INVOLVE rates, so really generous rates in the proposal. And then we said, actually you know, if we did half of that which is still fair, you know, payment, or could be fair, then we can meet more often face to face and then, you know, the PPI group then made the decision to say, "Well we prefer the face to face meetings and to do more of them, so please, you know, can we have a lesser payment and then, but then meet more often," you know so I think there's. And that’s a nice way to kind of delegate a way of a bit a decision so, you know, cost it really generously, you know, based on INVOLVE rates or, you know, any of the big, big bodies are quite generous about their hourly rates aren’t they, or the daily rates. You know, cost it accordingly because it might, it might actually, you know, look nice in the funding and then, you know, give yourself a bit of leeway then to kind of spread it, spread it as you want I guess yeah.
Carl was concerned that paying people undermined the principle of volunteering, and Bernadette agreed that ‘it’s a bit like blood donors - if you start to pay blood donors you’re going to get a different group that are going to donate blood than if you rely on people’s voluntary contributions. So I think paying people will skew things possibly not the right way’. But Tom argued that small payments didn’t really undermine altruistic behaviour. John suggested payment was an important way to get a more diverse group of people involved. Others felt that it was an important principle to place some value on people’s time.
 

People should never be out of pocket, but Carl worries that paying for their time undermines the ethos of volunteering.

People should never be out of pocket, but Carl worries that paying for their time undermines the ethos of volunteering.

Age at interview: 46
Sex: Male
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Yeah I think the being paid is a difficult argument because you may end up with a different type of person, and there's a big argument – the whole book for economics was about what happens if you start paying people, you may get selected. I do think you should pay the right expenses at the right time. You should provide the right meeting spaces and lunch for people because they're giving their time. But actually paying people presents a problem because, then some people might see it as a particular job and then you get three or four of these. I think it's an altruistic contribution to research in the same way as people participate in clinical trials, they do that without paying, and I think that is actually the ethos of patient participation. 
 

David worries whether payment for involvement changes people’s motivation. But he can also see why it’s important.

David worries whether payment for involvement changes people’s motivation. But he can also see why it’s important.

Age at interview: 49
Sex: Male
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No, it's a double edged sword. I think I can see the reasoning behind it. I mean why should somebody give up their time and come and do it for nothing? By the same token I feel the same way about medicine though. Once you start and introduce fiscal rewards and things it sort of queers the pitch a little bit, and you do wonder whether you're getting, you know the best representation that you could. So, I'm not against it; I think it needs to be controlled, and I'd like – if people, you know their employers are happy to release them to come and do that without a cost to themselves, then that’s absolutely fine. Of course travel and things should be catered for, but I don’t think it should be an income, and if it gets to an income for people, and that’s what they do, then I'm concerned about that. You know the analogy though is charities. I mean charities, and some of the best charities, pay good dollar for the best people, and then that sort of irritates individuals, "Is that right?" So that’s the sort of perennial argument – do you, should charity be all charity or do you have to pay for a certain amount of quality, and that’s the way it is. I've kind of mixed feelings on that if I'm honest, and I'm going to watch that space.
 

Paying people for their input like everyone else on the team seems obvious to Tom, but he thinks people get involved mainly to help other people.

Paying people for their input like everyone else on the team seems obvious to Tom, but he thinks people get involved mainly to help other people.

Age at interview: 54
Sex: Male
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Personally I think people should be paid for their time as well as their expenses, but I don’t really understand all the reasons why people shouldn’t be paid for their time. I think there are dangers in paying people for their time because I guess you might get people who use that to you know, perhaps get more money for their activities than they should. Perhaps that’s the concern about it. But really I think the dangers of that are extremely small. And we ought to recognise the contribution that people make to these efforts not only in, you know, thanking them for it but in the way that the rest of us are recognised for what we do, which is in terms of money for our time.

Okay. And what do you think patients or members of the public get out of doing this, how do they benefit from it?

Well the individuals I think rightly think they’re making a real contribution to perhaps their own condition, their own health. But generally they don’t seem to be getting that. What they say when you ask them to get involved in research is they’ll do anything they can do to help if they think it might help other people. This is altruism. That’s what they get out of it largely. Yes that’s the main thing. I suppose they will also get some you know a feeling that they're spending their time usefully and so on. They may get a little bit of expenses but mostly what they get out of it is the feeling that they’re helping other people.
 

Offering people compensation for their time might encourage a wider group to get involved. John would like to see posters in every hospital encouraging involvement.

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Offering people compensation for their time might encourage a wider group to get involved. John would like to see posters in every hospital encouraging involvement.

Age at interview: 59
Sex: Male
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I think there should be a financial incentive which overcomes the inertia. I think, also, a financial incentive gives you a more representative group because people who are willing to give up their own time for free are less likely to be representative than people who say, ‘Well actually this is inconvenient - at least they’re compensating me for the inconvenience’. Now I’m not suggesting you pay wild sums of money… You’re not doing it just for the money. But I think that if you can take away the disadvantage of participating – the consumption of time and the effort of actually turning up – if you can compensate for that financially then I think you’d get a better representation. 

Also, I think every patient who is admitted to hospital, or comes to hospital clinic, - make sure that either there is a poster on the wall or a video message on the screen or they get a leaflet in their hand, saying that the NHS does have this interest and giving them a way of registering their interest, encouraging them to do so. And with a little bit of trepidation, you know thinking about this financial incentive issue, obviously it would be a bit of a problem if we got ten million applicants the day after offering a fiver an hour. We need to think very carefully about that. The patient who can’t be bothered, if you could make them a little bit more bothered they’re possibly your best, most reliable patient advocate as opposed to people who have more extreme views.
Marian pointed out that payment only helps so far – people who have jobs still have to get their employer to agree to time off.
 

Involvement may be limited by who can get time off work. Marian wonders if paying people to cover unpaid leave would be better than having to take annual leave.

Involvement may be limited by who can get time off work. Marian wonders if paying people to cover unpaid leave would be better than having to take annual leave.

Age at interview: 46
Sex: Female
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And one of the other difficulties of PPI in general, you know, it's voluntary. You mentioned the issue of payment that we do have to think about. But payment is all very well, but if you're in a job it's not just payment, it's you have to take leave from your job and so actually I guess the type of people who can volunteer to help with PPI for projects for grant panels is limited by who is going to be able to get time off work. And I think that’s something that we're going to have to solve with employers if we're going to get PPI, the best PPI we can. And maybe if one can be recognised to take unpaid leave with the balance of the payment to PPI members then maybe that’s one way round I guess. 

…I think people should have their costs reimbursed, and their costs reimbursed if that’s a lost day of work. It's difficult because you don’t want professional public members if you see what I mean? I don’t think it should be a job because then it loses its purpose. So, but costs in the widest sense, so you, as a PPI member, should not be out of pocket for going to that meeting whether it's your travel, your childcare, your work costs. And if it were recognised by the employers that it could be a day of unpaid leave rather than taking it as annual leave might broaden the representation we can get. Obviously you have to add in training days and things. So it's not an easy area to extend access.
There was some disagreement about whether payments for involvement represented value for money, or whether this mattered. Sarah A commented ‘PPI costs peanuts compared to a lot of the things that we pay for on grants’. But perceptions of value for money might depend partly on what was being expected of people and how well they were being prepared and supported to contribute.
 

If people being paid for involvement come up with ideas you’d never have thought of, that’s good value for money – even invaluable.

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If people being paid for involvement come up with ideas you’d never have thought of, that’s good value for money – even invaluable.

Age at interview: 29
Sex: Female
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Yeah, well you do want value for money but it depends on what you see as value for money. So probably some people saying that mean they want experts who are going to re-write papers for you, they're going to come up with amazing ideas. But actually one of the values, or the big value of PPI, is hearing the opinion of a group of people who you maybe wouldn’t actually hear. So in that way, having them come along, and tell you what they think, is good value for money. I'm thinking I have been involved in another lot of PPI – there’s a panel of parents that a colleague in another institution has, a panel of parents who she meets every two months or so, about anywhere between two to six parents each time, and she meets them quite regularly and they – I'm trying to think whether people would think that they're value for money, because they do comment on or discuss a lot of ideas. I've been along a couple of times – they do discuss a lot of ideas. But so one of the last things we did was my colleague said, "What other terms would you use to describe a fever?" And they came up with a hundred and one different things that maybe we wouldn’t be able to come with. So I guess that’s maybe not twenty pounds an hour worth in some people's eyes, but it is a kind of invaluable thing that you can get somewhere else yeah.
 

In Ann’s experience involvement isn’t always good value for money but perhaps researchers have unrealistic expectations of what people can contribute to.

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In Ann’s experience involvement isn’t always good value for money but perhaps researchers have unrealistic expectations of what people can contribute to.

Age at interview: 55
Sex: Female
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And we had a writing day the other day, and we had two service users there and about four researchers. And, you know so they get, they're paid their honorariums for a full day and travel and lunch which is, you know, it's not inconsiderable. And they are there and they are listening, but I can't say they're contributing to anything because it's too hard. You know, we're talking about where will we publish and what's the journal impact factor and blah, blah, blah. What relevance has that got to them? So, whilst we do want their involvement, you know, managing that… I mean they're probably perfectly happy, I think. They had a nice day. But I don’t think it was really good value for money, if we're really harsh.
 

Involvement can be valuable but payment should be ‘a thank-you, not an inducement’. Anne thinks paying people who do not contribute much is questionable use of tax-payers’ money.

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Involvement can be valuable but payment should be ‘a thank-you, not an inducement’. Anne thinks paying people who do not contribute much is questionable use of tax-payers’ money.

Age at interview: 32
Sex: Female
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I think twenty-five pounds an hour to come to a meeting and sit there is not value for money and it's not value for the tax payers. I don’t really know what I would pay people, but I think that’s like – you know they say there's a difference, an incentive is supposed to be a thank you not an inducement – and I think like twenty-five pounds an hour for some of our patient group might be considered an inducement, because I think that’s quite a lot of money really. I mean I don’t earn twenty five pounds an hour, you know; and I know like they are working and they’ve got to take time out of the day, but I think it's quite a lot of money. And as well the Chairs of the patient group, they get paid more because they get prep time, but I'm not quite sure what they're prepping. They get twenty five pound an hour to prep things outside of the meeting.

And one of the things that I've heard before about PPI is that PPI helps to use public funding in a better way. What do you think about that?

I think if you're getting someone guiding your research, someone steering it in the right direction, perhaps the direction that you’ve not thought of - because for instance, as I keep saying, you don’t have [specific health experiences] and, you know, to guide you in that way and to correct you when you're on the wrong path, I think that is a really good use of money. But I mean in my past projects they weren’t paid, I don’t think they were ever paid to come to anything. I'm trying to remember. They were never paid.

I think it's got to be pitched right. I think twenty-five pounds an hour's quite a lot. And I think, I'm not saying you know we've got to make them work for it, we've got to be whipping them, but they do need to be contributing more than just turning up and sitting there with their arms crossed and just not saying anything, because when they're not saying anything they're not adding anything.
While Anne was worried about people being paid and saying nothing, another researcher described the opposite concern: that sometimes people may feel obliged to say something at a meeting because they’re being paid, even if they don’t really have anything to contribute. Again, however, this could be more a matter of effective support and preparation than a problem caused by paying people. Alison was one researcher who wondered if having a more contractual relationship might help.
 

Alison wonders if a more contractual arrangement would be fairer and help ensure value for money but it could also exclude people.

Alison wonders if a more contractual arrangement would be fairer and help ensure value for money but it could also exclude people.

Age at interview: 47
Sex: Female
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And yeah I would say, you have to be a bit careful about this, but looking at the range of people we have there are some who I find much more productive and helpful than others, put it that way. There's something quite interesting about the process of involving people because it's quite a formal set up and people get paid an honorarium – it's, you know, quite a decent rate. It’s a hundred and forty pounds a day, something like that so it's not bad money, plus travel expenses and all the rest of it. So you know if you think of this daily rate, if that was your job that would be a good daily rate. But we don’t have any kind of selection process as such so, you know, if you put the call out it seems to be whoever kind of puts their hand up first gets the gig and sometimes you think, 'Actually maybe if we, in some ways we're treating this like a job, we should go to the next step and really sort of interview people and what's your relevance and experience to this study and de de de?' But then once you start doing that you're emphasising the power of dis-balance again. And it's, you know, we have the control over whether you take part in this or not. So it's, I find that quite a tricky issue really. 

Yeah the other side I guess of the whole paying people for being there, you know what's, there's a question about what you expect of them. So if someone is paid to come to a meeting and sits there and doesn’t say anything, is that OK or is it not OK? Maybe they were taking it all in and they’ll talk to afterwards; maybe they didn’t find there's anything relevant to them or maybe they were just, you know, tuned out [laughs] in which case should they really get the money? I think we rarely get people sitting there and saying nothing but…

…I'm wondering if we should have more of a kind of contractual relationship with them but then you can't, you can't sort of say, "Sign this piece of paper to promise to say three useful things per meeting," I mean it doesn’t work like that does it? So I guess we just have to accept it. 
Problems for individuals accepting payments when on benefits remained a major concern. It is often argued that payment is important to widen the pool of people who get involved and attract people who otherwise would not consider or could not afford to get involved. But paradoxically, as Vanessa and Hayley pointed out, it can increase inequality if some wealthier people are able to accept payment while those on benefits are not. 

As Ann said, it is a challenge ‘keeping on top of what the rules and regulations say because they change all the time, and knowing where to signpost people’ for further information. (NIHR INVOLVE has recently introduced a benefits advisory helpline to advise both patients and researchers about the latest guidance – see ‘Resources’ section). 

Dealing with this complexity around benefits was one reason why people found it helpful to have good administrative support for involvement in their organisation. Another benefit of good organisational support was to help ensure people got their expenses reimbursed quickly (see also Sarah above). Lengthy bureaucratic delays in processing payments were a common source of frustration and embarrassment. Where possible, some researchers recommended booking and paying for travel tickets and accommodation for people in advance, or reimbursing people in cash.
 

Pam describes how the Research Design Service has developed pre-grant funding support, helped reduce bureaucracy in payment systems and provided advice on benefits.

Pam describes how the Research Design Service has developed pre-grant funding support, helped reduce bureaucracy in payment systems and provided advice on benefits.

Age at interview: 54
Sex: Female
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So yeah, in the Research Design Service we’ve developed these payment mechanisms so that people can actually get some financial support to do the PPI before they get their research funded and - And I think what I’ve quite enjoyed there is tackling the bureaucracy because it kind of feels like if you can get through the payment mechanisms, you’re sort of putting your money where your mouth is, you know what I mean? It’s evidence of some commitment and organisational support. And it does, it can really take some doing and that probably sounds a bit geeky, but I’ve quite enjoyed that problem-solving element really to feel that that’s a way of demonstrating your principles and if something is important then you can find a way to make it happen.

And what sort of obstacles did you face with trying to implement that plan?

Well not, not many because I haven’t necessarily had direct personal responsibility for, for implementing these plans. But we’ve had a lot of support to overcome obstacles from people like administrative staff. Their roles can be quite vital. They’re behind the scenes, but if they’re the people that ensure that people get their payments on time, then they’re actually vital to demonstrating respect really. And then there have been, yeah there are some obstacles about the way in which universities might expect to set people up on a, an employment contract in order to process the money through the payroll systems so that, that can feel like an obstacle and it can be an obstacle for members of the public that don't understand or might even be frightened by some of those very bureaucratic formal procedures.

I suppose especially if there’s implications for benefits or issues around benefits too.

Yes.

Have you encountered that?

Yes, yeah. In fact because I’m a member of INVOLVE I’m actually working with them at the moment on that topic so I was on a telephone conference yesterday and revising the payments. And there again, as I say, some people have got specialist knowledge and so there are people that are updating the advice on welfare benefits and so it, it can be complex and challenging. And I think yeah that, that there are obstacles. But I think from my experience working at a sort of organisation on an institutional level means that you can put some systems in place and I suppose that’s where if you are encountering perhaps novice researchers or people that have not done it before you’ve got to do a certain amount of hand-holding to explain how, how these mechanisms work really.
 

If possible, Andy prefers to reimburse expenses in cash on the day, but it took some negotiation with the university’s finance team. ‘Thank you’ payments are a different system.

If possible, Andy prefers to reimburse expenses in cash on the day, but it took some negotiation with the university’s finance team. ‘Thank you’ payments are a different system.

Age at interview: 49
Sex: Male
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So the first thing to do yes was to set up that group and then the second battle was I was very keen that people should get travel expenses plus thank you payments and I called then thank you payments because obviously that then led into a whole kind of problem with university finances and pay and tax and stuff like that. So I was very keen to have that negotiation early on. And we, so we’d get those things in place, I think that’s really important. and so the first job was to get the principal Patient Public Involvement Group up and running and to get some systems in place to make sure that people get their travel expenses and their and one of the things that I kind of insisted on was that people should have their travel expenses whenever possible in cash on the day rather than waiting a month and that created issues because finance were worried about chunks of cash being kept in offices and money being handed out without it being properly recorded so that created some anxiety. But we got there and I think it was really important that people if at all possible could get paid on the day. Thank you payments slightly, you had to wait a little bit for that, that was slightly different. So that was the system we had.
 

Tina reflects on in the need for speedy reimbursement of people’s costs.

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Tina reflects on in the need for speedy reimbursement of people’s costs.

Age at interview: 56
Sex: Female
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Trusts and universities have to get better at understanding about reimbursement because even when you’ve got the money, if you’ve got a grant, you’ve got the money and you want to give them expenses – if a person with a cognitive impairment, say short-term memory difficulties, has managed to get, for example, finally managed to get on a train after three times to try to come to a meeting. They would forget it was the day so we'd start to ring them up. Once they actually got to the train station and got talking to somebody and forgot to get on the train. They’ve managed to get a ticket, get on the train, come to a meeting, then I can't say to them, "Can you fill in this form now? Can you give me your date of birth, your national insurance number? Then can you take it all home and then when you’ve got your ticket send it back to me and in a month and a half to two months' time we might give you your money?" We can't do that, we can't do that. So Trusts and universities have to work out their organisational issues, their bureaucratic issues. 
 Alison made the point that there was a danger in researchers trying to save money by involving local people who would not incur so many costs. ’It's a lot of miles and it's a night in a hotel and all the rest of it, and is it OK to say, "Sorry we don’t want you; we want someone local who's going to be cheaper?" You can't really… because then you're biasing your involvement structures to people who happen to live down the road.’ Whilst local involvement might be fine in some cases, for other purposes a more regional or national sample might be appropriate.

As well as formal payment, researchers identified various other in-kind incentives to offer people. These included good refreshments; volunteering credits or certificates for people’s CVs; social events; learning opportunities and skills development.
 

Young people in Gail’s project chose not to be paid but benefited from including it on their CV and getting references and placements. Feeling equal and empowered isn’t just about being paid.

Young people in Gail’s project chose not to be paid but benefited from including it on their CV and getting references and placements. Feeling equal and empowered isn’t just about being paid.

Age at interview: 42
Sex: Female
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I understand why this is a tricky issue yes, so I get paid to be at those meetings because I get a salary to be there. Our young people elected not to be paid. We gave them the choice and asked them what they thought. We pay, you know, we don’t expect them to be out of pocket at all for coming along to the meetings and participating, but in terms of financially in, working with the young people who’ve been involved in other aspects of service development within the hospital they felt that they wanted to do it for other reasons. So, but you know, I can think of young people that kind of, have really valued having things on their CV, have asked for references, have gone on to do placements elsewhere in the organisation, thinking about their future career. But ultimately what young people, our young people said to us, and echoed something that comes through in the literature, is that they want to do it because they feel they have a responsibility and a right and a duty and they just want to. And to feel like they were paid an hourly rate to do that would maybe demean the reasons why they got involved. 

Now I think for me I’m just going to ask that question every time I set up a group and every time you know, at different points during a long scale piece of research, to see which each group want, but it’s a tricky issue…

I suppose, the one thing I actually would say is in some way, you know, I guess could it be argued that in not paying the young people an hourly rate to actually turn up and perform the roles that they want to perform, does it mean they’re somehow de-professionalised against the adult researchers that are sat around the table getting a salary? Maybe so. I can see how that could be argued, but I think a professionalised role for young people is, in research, is more than that. It’s about having a voice, it’s about being heard, it’s about having some capital in the decision making process, it’s about making a difference and knowing how they’re making a difference. I don’t just turn up to work because I’m paid; I turn up because I enjoy my job and I hope it makes a difference. So I think young people can feel professionalised within their involvement roles even if they elect or it’s decided that they’re not going to be paid an hourly rate for what they do. But I think that they can be recompensed in different ways but I think you always just need to establish this at the outset with any particular group and make sure you're asking questions and thinking these kind of things through.
 

Once a year Valerie’s research unit organises a family fun day out for families involved in their research.

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Once a year Valerie’s research unit organises a family fun day out for families involved in their research.

Age at interview: 39
Sex: Female
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Involvement in the faculty is, you know, a real spectrum of involvement from once a year to – well, everyone gets a newsletter. Some families we never see other than that but that’s fine, they don’t want to be taken off the newsletter, and other families we see them once a week or something. So yeah so it's, although we call them the family faculty they were a group, they're quite a diverse bunch that we don’t see some of them a lot apart from family fun days. Annual family fun days where we go to the Zoo and things like that, it's always a good one to get the faculty together.

Mm so tell me a little bit about that?

Oh it's brilliant, it's fantastic. Yeah, just once a year we - I think we've done four now - we organise an event which is open to all of the families who are on our database. We've done [the local zoo] and various other country life parks – we try to move it around so that’s it more accessible for different families in different locations. And it's just a day where we're all there, the whole team is there, and families come and have a nice day out and chat with us. In earlier years we didn’t even talk, mention research at all, you know, just not mention it at all. Last year, for the first time, we had a board where they could pin a research idea or a comment about the [research unit], but that’s all. It's meant to be about getting together and having a nice day, which is not something that families do very often, it has to be said. And obviously it's an expense for families to go out to kind of zoos and stuff. 

So yeah, it's just, it's exhausting but brilliant fun and yeah, I think it's kind of - just to say it's a way of giving something back is a bit trite. But that’s the general idea, “It's great, thanks for your interest in what we're doing and whatever level of involvement you’ve had, come along and have a day.” For us it's great to meet the children because we don’t, until very recently, we haven’t. We usually only meet the parents here at meetings and stuff like that. So that once a year is pretty much the only time we meet their children and, you know, the partners and stuff and names to faces and stuff like that, so it's good fun.

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