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Patient and public involvement in research

Difficulties and barriers to involvement

There are many reasons why people may find it difficult or challenging to get involved in health research. These may include personal difficulties (physical and/or emotional), organisational barriers (such as timing and location of meetings), language barriers, and the way researchers think or act sometimes. Solutions to some of these problems are explored in ‘Factors which make it easier to get involved’.

Finding out about opportunities

An important issue is raising awareness of health research and making sure that learning about involvement opportunities isn’t just a matter of chance or accident, as it often seems to be. (See also ‘Path to involvement – how did people find out about it?’ and ‘Raising awareness of opportunities for involvement and finding new volunteers’). For example, Francesco wanted to see opportunities being advertised to recruit a more diverse range of people (see also ‘Representing a range of views and experiences: diversity’).
 

There is a lack of understanding among the public about health research and little awareness of opportunities for involvement.

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Age at interview: 55
Sex: Female
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One of the things that I found talking to people who are involved that a lot of people, it’s really by accident that they’ve got involved, and it’s not just about getting involved. It’s about hearing that it’s a possibility to get involved and it’s something that happens. Most people outside of the community that does this, seem to think when you talk to them about being involved, being involved in research, they think you mean either as a researcher or as somebody who has nasty chemicals tested on them, and that’s really the only sort of participation in research people think about. 

I think it’s really important that research reaches out to people and connects with, with real lives and real people. It can end up in a bit of a bubble and nobody really knowing what’s going on inside. And then researchers get a bit anxious because nobody values what they’re doing, but then that’s partly because they don’t know what they’re doing, and so it’s difficult for them to be valued. So I think there is a really important piece of work to be done, going out into the community and explaining how health research works. What actually goes on and how people can be more involved in it.

One of the big things people have been saying to me, is they never realised how difficult and how long health research takes. And so a lot of people do something, they speak to a researcher and then they don’t hear anything for a couple of months, and they think, oh they’re not giving me any feedback, they’re not, they’re not that interested. Whereas the researcher might think that feedback is something that you give people in five years’ time or two years’ time or something like that. And that hasn’t been communicated very well in the past, I think. So people’s expectations of what research is, how quickly something will get into practice and how they can get involved in it. All those things are very unrealistic.
 

Academics seem to choose people they feel comfortable with. Francesco wants to see a fairer, more transparent process.

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Age at interview: 57
Sex: Male
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Now because academics, researchers are comfortable with particular people that understand their way of working, so they end up being research partners or associates because, you know, they got their Master's degree when, you know, it doesn't really give opportunity for people that might have not had, you know, whatever, for whatever reason a more formal education. 

So in the areas of mental health it's – this is just observational, it's not a criticism – it tends to be middle aged females that seem to dominate the research parlours. Maybe, OK that could be just chance, you know, that men are at work, they die a lot sooner than women because they've worked a lot. I'd better be careful, don't kick me on the shin. They, because they work a lot harder and, you know, men kind of like get to go six feet under a lot sooner, you know, longevity, life expectancy, you know, more coronary heart disease whatever. But what I'd like to see is an advertisement for involvement for PPI – people express an interest, not the old boys network, funny little handshakes like the Masonic Lodge and that or nepotism. I can't abide by that because, you know, I'll accept any amount of not being taken on as long it is a fair process because I wouldn't expect any favours. 
On the other hand, more formal recruitment processes could be a barrier to some people. Beryl was put off applying for something because ‘you had to fill in this really complicated CV and get references and I thought, “Well, I don’t know. I’m doing this all voluntary”, so I didn’t bother.’
Once people are involved, early experiences can be daunting. Roger A said it could be off-putting to some people but he saw it as a challenge; he said, ‘Perhaps I’m a congenital anarchist, I don’t know.’ But challenging is not always easy. As Derek pointed out, ‘If you’re troublesome, the doors can easily close.’
 

Entering a room full of senior academics can be intimidating, but they may not mean to exclude you. Derek offers advice on how to break the ice and ask questions.

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Age at interview: 62
Sex: Male
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When you first go to some meetings, there is a sense, I've been in rooms – this is rare, but it does occasionally happen – that all of the clinical leaders are all standing talking. And you walk in the door and you feel as if you are a lemon amongst oranges. And they all turn round and they look at you, and then they turn back to talking about what they were talking about. And to begin with I used to think, 'Oh!' And then after a while I realised that, that was more about my sensitivities and it wasn't a sort of. I sort of thought they always met regularly because they don't, so when they were in their huddle, they were playing catch-up. They were going, "Have you seen the latest policy? Have you heard what's happened about this research in a particular Trust?" You know. So, they were only playing catch-up. And actually what they would often do is turn round and go, "Oh sorry, you're the patient rep, you've come and." And I'd be made most welcome. But how do you open your mouth for the first time? You're sitting there sometimes with the people who treated you: professors, senior professors, professors with strange titles for their professorship, which sort of lifts them up on a plateau, Nobel prize winners, Knights of the Realm. And you sit, you go, "How do I speak here?" So I found quite often that my tricks of the trade are: ask to speak early on, so that, just say – and if they didn't have done introductions that's a good start. "Excuse me I'm new, could people introduce themselves? Could I say who I am?" Keep it short; it's not a life story, right? But just say, "I'm Derek, and, you know, I'm here as representative of the public patient, I'm a lay whatever." And just get people to quickly introduce themselves. That breaks the ice for you because when you're nervous, if you don't speak quite quickly your voice dries, mine dries quicker than most, so I want to get in there quickly.

Second one is not to bang the table, right, about some issue. To sit and listen and take part, but to ask one question in every meeting – because you don't want to hold the meeting up – about what something means. “Could somebody explain something” begins to focus the group back into speaking a language, which is understandable because they love their acronyms. They love their acronyms so much that as the longer we have become involved we have created our own acronyms in the world of patient involvement. So, do not think it is only them, right? So, just breaking the ice with a sentence about something, but if you don't want to do that just say to somebody next to you, "Could I just ask you, would you mind, could I write sometimes to you, what does this mean and pass it across to you?" Because it, we don't want it to stop the meetings going. 
 

Dave G found his first meeting completely baffling. It was only pride which stopped him from giving up.

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Age at interview: 67
Sex: Male
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We had our first meeting and I have to say that, quite frankly, we were both, well to drop down to the vernacular, we were gobsmacked because we didn't understand what was going on. Some of the words they used were quite intimidating. 

And we got a hand-out which described the project and it talked about a triple step, triple step wedge theory. And quite frankly I really hadn't the foggiest idea what they were talking about, so it was extremely intimidating, the first couple of sessions and I thought I was really out of my depth. In fact I've invented what I call the Green's Taxonomy of Patient involvement. I've actually done this in a PowerPoint and I present it at times if I'm asked to present about PPI work, I present this. It starts off with utter bewilderment: what am I doing here? I haven't the foggiest idea! Dear me, I'm out of my depth, you know. Let me out of here. And then slowly begin to acclimatise to what, what's happening. And then eventually you reach the stage where you understand most of it and you feel, I call it the breakthrough moment when you think, 'OK I know where I'm at, I know what I can do, I know my limitations, what can I do to push the project forward?' And that's really when you start being productive.

And what prevented you from running away after that first meeting?

Pride.

Right.

I don't like giving up on things. If I commit myself to something I like to see it through unless it's painful in which case obviously not.
Training, support and feedback

There was general agreement that it was unreasonable to get people along to a meeting or invite them to review or comment on a document without any training in how to do it, or at least clear guidance about what was expected (see also ‘What activities and task are involved’). Kath thought that lack of clear guidance also created problems for researchers. She said, ‘If people have a very clear idea of what would be really useful for them to do, they will cooperate with that and do it. I think the danger of the hobby horse riding is most apparent where there is not a clear guide to what is wanted from people and what they can usefully contribute, and then they tend to fall back on what they always say.’ Jennifer, Catherine and Helen all commented on how demotivating it can be not to get feedback on what you have contributed and whether it’s been useful.
 

Helen doesn’t know if her involvement has made a difference. If people don’t get feedback on how they’ve contributed they may not feel motivated to continue.

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Age at interview: 41
Sex: Female
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And how do you feel about not getting feedback on the comments that you've given or the suggestions you've made to researchers?

I wouldn't say that it annoys me massively but, I do recognise it from my own research that that is a very, very important part of the process that isn't happening. And I think, actually, that may well be one of the major parts of the process that keeps people participating’ essentially. Participating because you understand what's going on is great, and then being encouraged to participate is great, and then being supported in your participation is great. Enjoying the participation; fantastic. But, you need to understand what it is that you've done with your participation, you need to know. It's not patting somebody on the head but, it's saying "Thank you for what you've done, that was really useful, more of the same would be great, and this is what we have changed in light of all the comments we received." And even [if] it's just generalised, even if it's only something that's been sent round as 'We have received lots of comments, no names mentioned, these were the comments we received and this is what has changed.' I think that is hugely important, yeah.
 

It’s still hard to understand what’s being discussed. Jennifer gets little feedback and sometimes wonders if anybody really values what she says.

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Age at interview: 58
Sex: Female
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Again that can be very technical as well because you get a lot of the researchers attending these steering groups and they're in a little world of their own and they're talking between themselves at the table. You're here as just a member of the public and even now I have no idea what they're going on about, it's very, very difficult. They do, I do ask them if I'm not quite sure, I do say, "Excuse me can you explain that a little bit more to me". And they do try but it's still, it's still a bit a hard to understand. 

I sometimes feel am I there because they really want me to be there, or am I there because I, they have to have PPI? You know, do they really want us there? At the end of the day, you know, you're thinking, 'Well, I'm doing all this work, are they really listening to what I'm saying here?' Although, like I said, there was one, that the last study I did they have taken it on-board, they have taken it off and they are re-doing it just to see if they can, you know, recruit more patients, so yeah.

Yes so we've, I've had one feedback all the time you know.

In the last five years.

In the past five years from one, from one researcher yeah.

And how does it feel not getting feedback?

Mm well you think to yourself, 'Has this been labour in vain? Have you just looked at it and just thrown this, you know, not bothered,' I don't know, you just feel, 'Has it been worthwhile?' It would be nice to have had some sort of feedback to see how our comments, you know, what are their thoughts on our comments but no, not many.

And how do you think that could be changed?

I think, I mentioned at the end of the study and the comments, perhaps the end of the study, they could put their findings in more of, like an ordinary newsletter, a forum newsletter where everybody can see it rather than the British Journal, you know the scientific journals where nobody sees those magazines much, not many. 
Jargon and feeling excluded

A common problem when people first start getting involved is the use of technical language and jargon, acronyms and abbreviations (shortened versions of organisations names, drug names or even surgical procedures). Sometimes this is to be expected; as Charles said, ‘You have to accept that a lot of this jargon is shorthand and if we're going to have a discussion on a research proposal and not die of malnutrition, we need some kind of shorthand.’ But people complained that a lack of explanation of terms used could leave them feeling left out of the discussion; providing a ‘jargon buster’ glossary and banning the use of acronyms in meetings can help. As Andrew suggests, this sense of isolation can be made worse if you are the only lay person present in a meeting, or if the meeting is badly chaired so people don’t get a chance to speak or ask questions.
 

It can be difficult to contribute effectively to a scientific meeting if it is not well chaired.

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Age at interview: 67
Sex: Male
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The one thing I learned fairly early on, is that you're very reliant on the Chair, and a scientific meeting it has a dynamic, all of its own. People talk, they pick up a particular point, they flow and, unless the Chair is deeply controlling it, that flow is quite often uncontrolled, no less constructive for the fact that it's uncontrolled, but very difficult for someone that's not familiar with it to break into. So the role of the Chair becomes critical. And the, what I, the practice I developed early on, was, if I knew a topic was being discussed and I wanted to say something, I'd tell the Chairman before the meeting and, you know, catch his eye and rely on him to bring me in. And I still do that actually in a lot of meetings. You know, I've been at meetings for example with NICE recently, and I made it very clear to the Chair of that meeting that, you know, when he got to this particular issue I wanted to say something, so that I didn't have to fight my way into the non-stop, barrage of words that comes from the professionals.

Is that a strategy you would advise other patients or lay members to…?

Oh very definitely, very definitely.

Yeah.

I also believe that good Chairs will do that automatically, would actually turn to the patients in the room and say, you know, "Have any of you got a comment you'd like to make?" And I've been in the position now of chairing meetings where patients are present and that's something I particularly make a point of doing, but sadly not every Chair will do that. But, getting there beforehand and making him aware/her aware, very important.
 

At the first few meetings Andrew felt excluded by the jargon used, even though people were welcoming. It helped that he was not the only lay person.

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Age at interview: 64
Sex: Male
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My first meeting, indeed my first two or three meetings of this Board I think largely went over my head. People have said that all professions are conspiracies against the laity and the way in which any of us in our own professional area talk in acronyms and use jargon, is a way in which we automatically [laughs] exclude other people. I did have to get through that. Now I'm reasonably confident and I'm not in the least shy about saying, "What does that mean? I don't understand this." And I would want to be very fair to that Board – they quite deliberately appointed two of us to the Board so that I wasn't isolated and nor was my colleague; we were able to support each other. We did have little natters about, "Well I don't understand any of this; what do they mean?" and while there was, not very much in the way of induction there was plenty of opportunity to ask questions, to get support, to be guided through what I rapidly discovered was really quite sophisticated processes, and transactions that, that this network was involved in and which I needed to begin to understand. People were very pleasant and, and very patient, very happy to listen and to answer questions, so I have absolutely no complaints but it was quite a culture shock coming into that kind of environment.
 

Roger A has had some training through a research network. The biggest difficulty is dealing with jargon.

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Age at interview: 65
Sex: Male
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I have also had the opportunities to do various training courses with DeNDRoN and any others that come along and I now see that where they were once few and far between if you wait long enough and three or four will come along at once. And that’s starting to happen now. I have I think the next one’s two or three that I will be looking through DeNDRoN and there’s also an offer of one through my local Community Health Care, NHS Foundation Trust that is also offering a training course to lay patients.

To lay patients?

I think they call it the Lay Patients Programme. But…

What sort of… what did you learn? What was the kind of syllabus of these training courses? And who was on them with you?

The biggest difficulty, I think, for the lay person is to go into a very rarefied, very academic environment and learn the language. To try and coax the social and health care professional to speak in good plain English. Jargon is terrible but at the same time, you do, because it’s a complex subject you do need a shorthand, so it’s almost like learning another language in some instances. I’ve got a favourite expression is that looking at some of the documentation within research is like trying to read a Polish opticians eye chart. 

DeNDRoN for someone like me, what is DeNDRoN?

Dementia and Neurodegenerative Diseases Research Organisations Network. 
Trying to take part remotely (by phone or in writing) can be even more isolating, even if for some people it’s physically more convenient. Andrew commented that if allowing people to feel ‘isolated and threatened’ was ‘a sure way of losing people’. Common problems with telephone conferences included background noise, technology problems, being unable to follow the conversation and finding it hard to contribute. Good chairing is essential to overcome some of these problems. Of course they will affect anyone joining by telephone, including other researchers, but they may feel more confident to chip in.
 
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Teleconferences can be really hard to take part in. Hazel once couldn’t hear anything because someone was eating a packet of crisps near the phone.

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Age at interview: 67
Sex: Female
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I think there is an effort made to respect, and there is a lot of lip service paid to it… I mean I'm paid to attend meetings and kind of paid quite well and, as I said, I don't think I'm good value for money because those aren't particularly good meetings for me, and not for them either, they don't benefit particularly from me, but we have parents who ring in to those meetings, who live in other parts of the country, don't say a word all the way through and occasionally somebody will say, "Oh is that person still on the phone?" because they've forgotten and they'd all gone off to have lunch and left this person without actually saying. Or what's happened to me – I was on the phone to a meeting in Liverpool for a steering group, and somebody sat next to the telephone and ate a bag of crisps and I couldn't hear a thing that was going on [laughs], there was terrible loud crackles. And there's a limit to how much your dignity will allow you to sit at home saying, "Is somebody eating crisps there?" …Let alone say which page of the papers that you're on.    Or rustle the papers very loudly near the telephone so you couldn't hear it even if they did tell you.
 

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Living with illness and caring responsibilities

The nature of health research is that many of the people who want to get involved may have continuing health problems or caring responsibilities which affect what they are able to do. Talking about research into serious illness can also stir up strong emotions. Elsewhere we explore in more detail some of the personal costs of involvement. The need for preparation and support for dealing with any emotional situations which may arise is discussed in ‘Training and learning’, though many people won’t find this a problem.
 

As a single parent, Catherine’s caring responsibilities limit what she can take on.

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Age at interview: 51
Sex: Female
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Well I would have liked to do the training but, so the barrier there was that if I gave up, what would have been two days, because I would have to travel the day before to be at something for ten o'clock or travel the day after because I can't travel on top of attending something for a day. So to give up two days of my time for no pay, when my husband was alive and we were both self-employed, financially we couldn't, I couldn't really justify that. I think there was a thirty pound ex-gratis payment plus expenses but I couldn't justify that. Now as a single parent, as a widowed parent, a constraint for me now has been to separate from my child, she suffered from separation anxiety for a long time. So to be able to attend something if it wasn't within a normal day, again would have been too difficult. She didn't stay with anybody else, relatives or otherwise. My daughter didn't even want to go out to school, so to leave her at any time was difficult. This is an unusual situation and not many people have that but even when it's not that extreme, if you're a single parent, leaving a child in someone else's care or if you're a carer, leaving your child in someone else's care when they have a, their own long term medical condition, can be quite complicated. I'm sure that people do have the helpful grand-parents and so forth but there are constraints. It's difficult to do the job because of your experience, your experience might be the reason that you're wanted but those experiences are ongoing if you're a long term carer. So those would be the constraints.
 

You may need to be prepared to be upset sometimes by what you hear.

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Age at interview: 55
Sex: Female
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So you do have to be willing to take that risk and researchers need to recognize that that is a risk and be willing to support people emotionally should they become distressed by what they find out through, through the process. I mean if you’re suffering from an illness and you don’t realise that it has potential consequences. Or you’re taking a drug and you don’t realise that it has some very unpleasant potential side effects. You may well find that quite confronting, but you need to be prepared for that happening. And it might not be actually in the process of the research that you find that out. It might be through meeting other participants that you find out that these things might happen. 

So people who want to be involved, need to actually be aware that they are putting themselves in that position and that they may need to be prepared for that. And researchers need to realise that they may need to support people who find out things that are distressing to them.

One of the things that I bring to my involvement is the fact that I was very damaged through the experience of, of caring for my son. And so I do come to this with wounds. And some of these research projects have occasionally stuck sharp sticks into those wounds and, and it has been very upsetting sometimes. But that’s fine, that’s part of what I’m doing and I, I need to be able to deal with that.
 

Some of the things researchers present can be scary, but it’s necessary because otherwise you could get a bit blasé.

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Age at interview: 65
Sex: Male
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We've had people come in and we get researchers come in to talk to us and tell us what they're going to do. Sometimes what they're doing, they're explaining their research and they'll bring PowerPoints in and some of it is very cringe-making for lay people, stuff you may not really want to look at on the screen. Some of it's scary. But they come in and they give us an overview of why they're doing that particular research, which makes sense; they want to improve the outcome for patients at the end of the day.

And when researchers come to your meetings and they show things that are cringe making or, you know, things that you don't want to see, what, what do you mean by that?

Well we had one recently and it was to do with head and neck cancers I think. And he showed us some slides of some pretty horrendous looking tumours and that and… Something I'd rather not see to be honest, but it nails home, you know, why crikey we need to do something to stop this sort of thing happening or at least give best outcomes for that patient.

And do you think that that was necessary?

Yes I do because you could always get to be a bit blasé about the whole thing if you're not careful, and it's good every now and then to be brought back down to earth and see, you know, what, what it's all about really. So this, this is purely obviously for cancer research. Other research areas I imagine would be pretty much the same. You need to know every now and then why you're doing it.
 

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Relationship with researchers and practical organisational issues

Many people had developed strong partnerships with researchers and really enjoyed the relationship. They felt valued and listened to, and loved hearing about the latest research. However, if involvement is done badly, there is a risk that people will be put off and give up. Kath encouraged researchers to be more thoughtful about the needs of the people they ask to get involved, and to ask for feedback on what their experience has been. Marney said it was frustrating, irritating and rude when people didn’t acknowledge her input. In ‘The costs of being involved and payment’ we look at what people said about their financial needs, but researchers also need to think about other organisational issues such as how travel is arranged; timing and location of meetings; accessible venues; catering; timing of deadlines for comments on documents; how and when to get documents to people (by post, by email); making sure people don’t have to wait a long time for expenses to be paid back. (See also ‘Representing a range of views and experiences: diversity’). Having the support of an effective involvement coordinator can be a real help, and it was often pointed out that organisations need to set aside a proper budget, so they can fund involvement early on, before a study has been funded.
 

Researchers need to think about how to include a wider range of people. Payment is one way to support people with different needs.

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Age at interview: 67
Sex: Male
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Oh yes well perhaps when we first started the PPI there was two of us patients and the other patient had been working in the health industry. So I had three specialist nurses for research, and her and just me as the token idiot you know [laughs] who's asking the silly questions. But that was, that's, it's OK, they sort of, you know, pat him on the head, you know, he's still sitting there when you come out trying to write down notes so he remembers or what it is. 

And it's alright to ask, you know, to ask people, "Can you explain this to me?" People want to help you know but you have to ask and being in the PPI is asking for other people who are not, who can't be there because unfortunately within the PPI you get a lot of people like me, white retired people who've got time and how do we get the voices for the people who are hard to get? They've got to earn a living, they've got to go out there and, and they've got children, they need babysitters and they can't just afford financially. We've got to find a way of getting their voice heard somehow – that's another little bone that I've picked up on. That I'm gnawing on.

And have you any ideas about how to do that?

Well I think, I mean when we have our meetings, they're great meetings if you want to get involved in PPI. We start at eleven o'clock, we have lunch and finish at two o'clock. That's a great work day [laughs]. And they do help us out by giving us fares and we can claim back fares and things like that and they make it quite easy. I don't personally because I've got a bus pass you see, but young people they've got to get there. I think there might be something where they can give some sort of amount of money, which isn't working, I don't know, fifty pounds a day, you know, just, just to so that they can pay someone to look after their children. I don't want it to be, become an industry where it's a factory. But we're going to get the same boring people that retired, people who've got the time and the inclination, we've got to get to people joining PPI who can't do it. We've got to make it, we've got to like we do for the disabled, we enable them by putting slopes there for the wheelchairs and we have now enabled people so that they're in our society more. And we've got to do the same for this with the PPI, we've got, their voice has got to be heard in the medical bits and so the way to enable them is to have some kind of little bursary that when they come to meetings they can do it without financial loss.

And people who are on your group are they all similar to you, that you know you said that usually people are white, retired, you know I don't know if you said middle-class?

I didn't say middle class but [laughs] I don't think I'm middle class, see? A builder, you know, doing, digging the trenches and things you know.
 

Poor experiences of involvement can put people off. Kath is encouraged that researchers she knows are learning from mistakes.

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Age at interview: 55
Sex: Female
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I think one of the things is about actually, I think we have covered it to some extent – we were talking about people having their expectations baffled and, and not getting feedback and what have you. But actually there is a real issue about people who get put off of involvement through having poor experiences and I think there is something about needing to, researchers needing to think about what the needs of their participants are. I mean some of that is like really practical things about access and you don’t invite a dozen diabetics to come to a meeting 50 miles from home, and then not offer them a biscuit when you get there. You know, it’s, it’s those sort of things that, that do make a big difference and do have an impact, and so there is something about actually researchers asking for feedback about what the quality of the involvement was and giving feedback, as we talked about before to the participants immediately.

So there is, there is a learning process. That’s one of the things I’ve really enjoyed about working here, is that I do feel that there is a learning process going on. When mistakes are made they’re not sort of like, “Oh we mustn’t ever talk about that again”. That’s talked about and discussed and learned how to move on from that. And I think that’s something that, that needs to be done much better.
 

It’s disheartening if researchers don’t listen or show appreciation, and if little thought is given to the time and effort people have to put in.

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Age at interview: 53
Sex: Female
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It is of course time consuming, or can be time consuming, which, were it spread evenly across the months and years, would just be absorbed, but typically, of course, it tends to cluster. And it can involve quite a lot of reading and writing things up in order to do it well which, when that happens to coincide with other busy periods in other parts of one's lives can be exhausting. But as ever when taking on something new, the learning curve can be steep and that can be tiring. But I would say all of its worthwhile when people are appreciative and listen, and you get a sense of moving forward together. That's the real reward. And in instances where that doesn't happen, that is the cost. The biggest cost I might say is the sort of erosion to the spirit, shall we say. But it can be financial cost and for some people, quite rightly, they are very meticulous about collecting their expenses and where it's not offered, I mean people will always say yes if you ask, but actually it should always be offered.

Rather than you having to ask?

Upfront rather than you having to ask, which is the sort of take home point. And then where it isn't, it's mostly just people who have forgotten about it or other things have intruded but, yes… I mean one study I was taking part in, the conversation came up obliquely and I mean I'd been involved with the project for well over six months, and the researcher suddenly said, "Ooh well yes, I'm sure we've got a component for your fares if you would like it?" And sometimes the timing of things is not, well I mean you have to make your timing fit with everybody else's professional life, which I think you just have to accept. But they have to be aware that, for some people who may be physically more frail, they ought to be trying to think about how people get into the building and whether the room's warm enough and all those sort of physically comfortable things. 
 
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Hazel has seen good people leave if they feel they’re not properly involved.

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Age at interview: 67
Sex: Female
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I've seen several people who are very good and who left because they weren't actually involved. They thought that being on the committee they were going to get kind of research projects to look at and be involved in and quite reasonably they weren't, probably because there weren't any that anybody thought were suitable, and they have gone and I think it's, you know it's really bad for them in lots of ways to, to feel that they're not, that they're not being useful especially after doing training and going through various conferences and things. I, as I say, I just think there is an afterthought, a very worthy afterthought but an afterthought nonetheless and it's… and people are kind of quite easily disappointed if they feel that they aren't actually participating in the way that they hoped to.
 
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Being challenging and using personal examples all the time to get your point across can feel exhausting.

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Age at interview: 43
Sex: Female
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One of the things I find very difficult is that in some ways if you're being the patient in this kind of situation then you're almost there to be stroppy. You're there to be challenging and if you're not being challenging you're kind of not doing your job. And that’s not of course entirely true.  
 
But compared with my previous life when I was, didn’t even talk about my condition at work, it's tougher. It's a more; it's confrontation in a weird way because you still don’t want to be confrontational. You don’t want to be an arse, but you are – you know that if you let something slide you're not doing your job. So there's times when I've had to use quite personal examples to get my point across and that’s really exhausting. 
Occasionally people felt researchers’ behaviour was not just thoughtless but actively hostile or dismissive, or arrogant. Dave G suspected some researchers were more hostile than they felt able to say; ‘Let's face it, I mean, who's going to put their hand up and say, "We don't want patients"? You know, they're not going to do that, are they?’ Feeling that researchers saw involvement as a tick-box exercise they didn’t really believe in was frustrating and at times upsetting.
 

These days Tom feels his views are actively asked for and it’s not a tick-box exercise, but ‘there’s still dinosaurs out there’.

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Age at interview: 68
Sex: Male
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Do you think there's any danger of it being a tick box exercise?

Well we have come across that in the past and it still does exist – not just in research but in other areas as, as well. "Do you have patient and public involvement?" "Oh yes, aye I spoke to so and so on the phone," it's ticked off whatever. So yes, there is – I have to say I've been probably fortunate where anything that I've been involved in , my view and my opinion, if I haven't offered it, it has been asked. There were occasions where you felt, way, way back when I first got involved, one or two situations where that could have been, you know, the tick box situation but I always managed to get my, my say in things. And I think it, I think it's now, from my perspective, you can't go to a meeting or anything like that and, and hide because more and more your opinion and your view is being asked for. And it gets to the stage where if, I mean I've been at meetings where I've more or less, for quite a lot of time, everything has been said and, "Oh that's fine oh I agree with that," and during the course of the meeting the Chair has said, "Tom you're very quiet, have you got nothing to say?" So you can't hide, you know which is good because then we're getting away from the, the tick box situation there. But it still does exist in areas – some of my colleagues have experienced it but I've been quite fortunate in that, you know, my opinion has been asked for if I am sitting quietly and drinking my tea.

I mean there's still, with all due respect, there's still dinosaurs out there who think, 'Oh no they shouldn't be involved, you know, we'll tell them what to do and what, what's best for them,' you know. But among the ones who have come out of the dark ages then yes it's very much accepted because a lot of them won't progress or won't proceed with their proposals or their studies or whatever without contacting consumers. 
 

Involvement can sometimes make Sharon feel ‘disheartened, dissatisfied and disappointed’, especially when researchers treat it as a tick-box exercise.

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Age at interview: 44
Sex: Female
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And I should also add, there are times when you will not be in agreement and you will, so it's not always great, you know it's not always satisfying. There are times when you don't agree or when you feel frustrated, so I should also, so instead of thinking it's all wonderful all the time, there are definitely times when you feel disheartened, dissatisfied and disappointed in the outcomes of a meeting or in some of the discussions at a meeting. So you do, it's not always wonderful and positive all the time, but it's still finding the way to work through those and challenging or, yeah, so challenging or channelling those problems into finding a way forward together as a group. But in, so in terms of things that – I don't think I'd have ever challenged people before who are in the medical profession in rheumatology. Yeah, so I probably wouldn't have done that. And I probably wouldn't have, I was already chairing the SNAC group so I can't say that PPI has led me to doing that, but I, yes so I wouldn't have spoken at a conference before. Yeah that's probably it.

And you know when things are frustrating and you're disappointed and so on – what are the kinds of things that spark that?

Oh probably where people don't, probably where committee members don't understand what PPI actually is and they see it as a tick box exercise or it's something they have to do rather than something they actually value. 

That would probably be quite frustrating or I think I talked about before, when people say about ‘using’ patients for research. I just find that disappointing and it's good people just think about ‘involving’ patients or ‘engaging’ patients. But that word ‘using’, I just dislike it yeah.
Most people felt this was becoming less of a problem over time (see ‘Changing attitudes to involvement over the years’), but there was also some worry that pressure from funding organisations could be making the situation worse. As Andrew said, when researchers fill in a grant application form, ‘You've got to tick the box because you won't get the money at all if you don't… And that's the real worry because then my experience has been that researchers are rushing around finding, retrospectively, some engagement with patients, and that's not terribly helpful.’

There were mixed views on whether the younger generation of researchers or more senior investigators understood involvement better; either way, people felt the attitude of individual researchers was crucial in promoting or resisting involvement. Dave G suspected some patients had been less supportive and encouraging towards academic partners than he had, and were ‘frightened of putting the wrong foot forward.’ Marney added that people might be reluctant to say anything critical while they or a family member were still having treatment.
 

Derek reflects on levels of hostility, reluctance or support among different researchers – and on unrealistic expectations from patients.

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Age at interview: 62
Sex: Male
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It's so difficult for any professional group no matter which profession. They, build round them a set of morals, cultures, language, attitude and values, that are often exclusively to that group, they form unions and associations. They have to develop their own ways of doing things and qualifications they maintain. So anybody who tries to come in from the outside is obviously met with a sort of barrier of going through. So there are two barriers – would we be able to break through and into that community? I've got to say, in hand on heart, that, yes, we met some individuals who were sort of slightly cynical, but I would say the majority – no - a strong minority were for us, a large majority were, "Well we'll give it time because if it goes, it goes and, you know, tough," but weren’t anti it. A few were highly sceptical and would voice their concerns and worries because, rightfully, if you've got one or two loud patients saying something, how representative, how can they represent others? So that's a good point that was made. And then there were a few that you just went, "Well actually, you just don't like me". But actually, I think they probably just didn't like me rather than like involvement. But actually they were, they were the minority. 

The other barrier I would talk about is that the barrier of some patients who came in with unrealistic expectations. They either wanted one particular thing changed or they'd had a bad experience and they wanted a - So, but actually, what was interesting was once we explained what we were trying to achieve, how we were going about it, and the methods we were using, those people just, they just all went, "Well actually now we're part of the camp, we'll sign up to that," as most people do. You don't find that – things are not going to change tomorrow, but if you can see the possibility that things are going to change in the future, you’d come along with it. So, even people I was told were difficult and troublesome, they were just, they were great, they were smart. And they'd only be troublesome because they couldn't go through the door. So, they just found that they were battering against a, with a ram against the door. Because when we said, "Come in," they went, "Oh what, what?" And so, so those two were the main two barriers. But the other thing I would say is that in this, if you want to create change, you need not just the group who are coming in from the outside to create change. You've got to push – you need people in the inside who are pulling.
 

It’s often assumed more senior researchers are more sceptical about involvement, but Brin has found some are very open to it.

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Age at interview: 54
Sex: Male
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Well the people that I work with they are definitely improving you know, whether that's my input or whether it's just their experience as well. You know because I think you have to accept that researchers learn constantly and unless they're sort of old lags and they may have more difficulty with PPI. Some of the more senior academics that I've been involved with have been the quickest to learn which has been really rewarding.

Why's that?

Because I think, you know, I'm like anybody else, I had a stereotypical view of senior academics. There have been one or two people who have reinforced that stereotype recently but I've got, woe betide them because my self-confidence is back and I've managed to show them the error of their ways. But there are other academics who have been very, very humble in their acknowledgement of room to improve, put it that way.
However, many people suggested the problems were often unintentional and that researchers just didn’t really know how to involve people effectively or were even afraid to try it. This prompted some people to suggest they might need training. People could sympathise with how difficult it might be for researchers. A particular concern was that involvement was more likely to make a real difference earlier in the process, but often it was left far too late. The National Institute for Health Research can provide support for earlier involvement through regional Research Design Service teams.
 

David Z heard a presentation at an INVOLVE conference about why researchers find involvement difficult. He thinks some of it is an excuse and could be easily addressed.

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Age at interview: 68
Sex: Male
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I didn’t speak, as I didn’t present anything, but I certainly contributed to discussion and debate in the papers that were presented and in the discussion that followed, and I found it really enriching and there were people, who in their presentation acknowledged that some, when they had carried out a survey of researchers within their university very few had responded to their email survey and the ones that did indicated some of the reasons that they wouldn’t engage with or that they found difficult to engage with the participants of the research.

Some of it was due to a lack of understanding of what might be expected of them. Some of it was due to the feeling that they hadn’t had any training. But my own experience is that if you approach people and share with them what your objectives are, it’s not difficult for people to then respond to that and to try to improve on anything that you might, might produce and I wonder whether it’s an easy excuse.

I recently read a paper, only this week, that was published in the Nurse Researcher and had been forwarded to me. And this was about a research engagement at a university where there was an active engagement with patients and carers and they called it the… Patient Carer Advisory Group and they discussed some of the difficulties that they had experienced. Some of it was budgetary and the fact that they hadn’t anticipated the additional cost that it would be. But if people then read that paper and respond to it, and in their initial proposal include sufficient budgets to enable participation, you know, someone who has suffered a stroke may need a carer to attend with them, so travelling costs or hiring of appropriate accommodation may be greater and this came out in the paper.

But as a consequence the researchers felt that their research had been improved and that the, there was conflict between them and the patient group because the patient group wanted to edit some of the contributions by some of the subjects in the research. I think if ground rules are set by the researcher and the advisory group, then there should be no problems.
 

It’s understandable that researchers find it hard to let other people question their plans, but they need to involve people much earlier.

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Age at interview: 64
Sex: Male
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I can understand why it's not in researchers’ consciousness. If you're, you know, you have a bright idea about research and indeed that you're really committed to it, and all your training and the work that you've done yourself convinces you that this is the next great thing which you can do. The last thing you then want is a whole lot of amateurs coming on and telling you why it's not going to work terribly well or raising questions which you'd actually thought about and sorted in your own mind five years before, and this kind of thing. You know, I mean involving ordinary members of the public, warts and all, must be, at times, enormously inconvenient at the least and really disruptive and annoying. It probably takes an enormous change of mind-set for some academics, some clinicians, to start from a different perspective, which is 'what's this really about?' It's about the patient at the centre. It's about the, the needs of people individually and collectively at the heart of this. That's where I start from, and therefore I need to start by listening to them and finding out what's important. 

I think, so I think that really the answer to the question is that this is huge educational process and it's probably not something that many researchers, particularly in the natural sciences, actually come across until they’re well in to a research career. It may be a bit more familiar in some other areas, but I'm not even sure about that. So, I think, I think that one of the tasks that we really have to do is to work with researchers not just about the mechanism for involving patients, because I get quite a lot of that – I mean I do get, you know, invitations at, at the thirteenth hour of a research proposal to help find some patients to get involved in this because ‘we hadn't thought about it until now’ kind of thing, you know. We need to start, knock that on its head because, I mean if we're spending the best part of a billion pounds a year of public money on research that needs to start from the needs of individuals and the population. Patients and the public to be involved in that dialogue. 
 

Involving people at the last minute is bound to be ineffective and unsatisfying for everyone.

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Age at interview: 53
Sex: Female
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And you've been involved in PPI and research for around eighteen months or so, and how has your sort of, your experience of the first eighteen months been?

It's certainly been a steep learning curve. It has thrown up a number of points around issues of what constitutes good practice in this area and how some people involve patients very well and other people have not really taken the time to think through what participating could mean for this patient. It needs to be fleshed out a bit more fully than, ‘Well they said they wanted to so let's get on with it’. So certainly everybody tends to find it more satisfactory if people are involved in the conversation from the beginning. I've been involved in one or two things where the patient has been brought in quite well down the organisation or route and then where they raise issues, which are acknowledged as valid, but which run contrary to the sort of direction in which things are moving at present. It's just too difficult in terms of time spent and finances spent and where everybody's head space is, to turn things around to do it better. So involving people at the beginning is really important and making the effort to foster the communication, the team work, and the attention to detail so that you move forward as a close knit team. Everybody then finds it very exhilarating and my experience is not only do the individuals find this rewarding but I've seen researchers get really very excited about how real the whole thing seems as opposed to sort of theoretical and academic. So they can start to see how the research they're doing is really going to benefit people so it gives a sort of extra sort of brilliance to it. It makes it more exciting and engaging.
Researchers may find it harder to see how or why they should involve people in some projects more than others, particularly those where the research is quite technical or where the focus is not on illnesses or specific conditions. Beryl commented, for example, that it would be difficult to see how some laboratory-based research would lend itself to involvement. Some studies are largely about economic analysis, or secondary analysis of existing datasets (where data has already been collected and then it gets re-analysed for another purpose). Studies about public health (where the focus is on whole populations and interventions rather than individual patients, such as road safety or healthy eating) can also be more challenging. But people argued that there should still be a focus on real people and how they might benefit from the research, however technical. Charles felt that ‘there would be a role for PPI actually in every possible field’. Roger B talked about illness prevention research as a place where general members of the public could usefully be involved: ‘You've got to have people who may one day be affected by whatever – this disease, or that disease, or that group of diseases – if you're going to reach out to that same group of people with a message which is about prevention’.

Asking the right questions

As Derek noted above, sometimes difficulties came from patients’ own expectations or behaviour, and several people had examples of times where lay people came along with their own agenda, which could be disruptive – ‘hobby horse riding’, as Kath called it. Of course researchers may also come with their own agenda, and sometimes challenging researchers’ assumptions is exactly what’s needed; whether this is interpreted as disruptive or appropriate may depend on your perspective. Again, Derek argued training could help direct people’s energy, ‘but it's not about training them in a sense of training them to be an awkward squad, but actually training to ask fundamental questions’.
 

People who ‘have one angle to push’ can be frustrating for everyone.

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Age at interview: 53
Sex: Female
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But people's time is precious and the idea is to move on and achieve something so what's really difficult is if you take somebody on and then it becomes apparent they are not going to be helpful to you, how do you then disconnect them from a project. So it's fairly easy if you're a researcher that wants somebody to comment on your funding bid or something. I mean hopefully you have half a dozen people or more who have sent you their thoughts which then when they're combined improve your bid. And if five of those gave really helpful input and one didn't, well then you just don't ask that one on another occasion. But if you've got somebody on board for the duration of the project and they drive you nuts, then you've got a problem and I think it's valid to recognise that.

That's an interesting point and I sort of hadn't thought about that before.

A team has a dynamic. And as I've said before communication, teamwork, attention to detail helps make it work. But there's always occasions where you will get the personality clash and you have to, you have to have a strategy to deal with that. And just as some people are still not, they haven't really got their heart in the project of really using patients. It's just something they sort of feel, 'Well I've got to do it,' rather than really believing in it. So there are equally some patients who just have one angle to push and who aren't able to take a more general outlook on something. And they're a problem as well.
 

You need to be challenging and assertive and stand up for your point of view when you feel dismissed.

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Age at interview: 69
Sex: Female
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Being able to stand up for your own point of view when apparently dismissed or challenged and to recognise that in, you know, in academic or research discussion, you know, debate can be kind of quite vigorous, and that disagreement isn't necessarily the end of the world. I was used to that from kind of family background but also having, you know, worked and had to, you know, to be director of something where I was responsible for representing, you know, my Unit and its values and ways in which I was trying to project it within the university and the to the outside world. 

So being able to confront, it's not about confrontation, but it's about, you know, being able to disagree without being confrontational, but certainly you have to be able to confront people at times if their attitudes or behaviour seem, you know, unacceptable, if they're overlooking a patient point of view. But it's having ways of introducing things that you feel are important or maybe something's been overlooked or been dismissed that you want to kind of get on the agenda, get discussed then you need ways of feeling comfortable about doing that and hanging on in there. And something that I probably haven't got enough of or done enough of, but would be good to do, is in actually getting feedback. "OK so if you remember I said this last time? Well what’s act…you know, what's actually happened as a result?" Have, you know, people will often come back to you and say when they haven't been able to do something. It's just not, you know, it's been a reason for it and you may challenge the reason but if it's real then that's OK. Say, "OK well next time let's get that into the funding earlier," or you know whatever the issue might be. 
 

Rosie enjoys working with others, but it can be challenging. She feels for the researchers when other users have a confrontational agenda.

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Age at interview: 55
Sex: Female
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…I think probably the most difficult things that I found is feeling frustrated with kind of meetings and with other service users and not agreeing with them and thinking they are being unreasonable and , you know, those sorts of inter-personal difficulties and differences which, you know, I find more difficult to manage. 

So it's not so much that I've been upset by the things that I've done, it's more like the, you know, in trying to have a discussion about something with a bunch of other mental health service users, you know, we've practically had world war three declared or something, do you know what I mean? 

You know I think it's part of the territory and actually that's probably the most difficult thing to manage, you know, that people, some people are, you know, I mean not only have they got, you know, views that you don't agree with that other users don't agree with but they've got their own agenda, they're here to get, you know, to make their point about X whether X has got anything to do with why anybody else is in the room or not. You know and you and other people have got to try and deal with that, you know, so I think that's the, that's the more current emotional difficulties and I think those are some of the reasons that public involvement is challenging because some people, some, you know, as with any group of people some people are easier to work with, are more co-operative, are more able to join and, you know, say things but be part of something and some other people are much confrontative or oppositional or critical, you know, and managing that, you know, can…I mean I've been in mental health meetings where people have, you know, they've been poor researchers doing something and some service user has said, you know, "You're like the bloody Nazis." I mean that's really difficult to be, now I know, you know, you can, you can intellectually, you know that that person's had a bad experience, they've felt, you know, controlled by mental health; you know you can understand it but in that moment, I mean a) that's horrible for those professionals to just get all that anger, you know, and far worse than that I have to say, I've heard, you know but that's a real difficult, but even if you do understand it you've still got to manage the situation and there are lots of other people who are all going, "Oh my god," you know. That's why it's hard.


Last reviewed July 2017.
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