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Patient and public involvement in research

Reasons for getting involved – helping others and medical science

There can be many reasons why people get involved in research. In this summary we look mainly at what might be called ‘altruistic’ reasons - wanting to help other people, improve research and make care better for future generations. Elsewhere we look at more personal reasons such as personal satisfaction and learning new skills). But in practice most people are motivated by a mixture of reasons which may change over time. 
 

After her son’s death Kath wanted to use her experience to give something back and improve things. But it was also about re-inventing herself. She has enjoyed it and learnt a lot.

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Age at interview: 55
Sex: Female
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Initially it was about, well I’d spent 20 years very heavily involved in caring for my son, in and out of paediatric hospitals, spending a lot of time sitting, watching and looking and seeing what was going on. A lot of very difficult and painful and confronting experiences, but a lot of good ones as well. And I did learn an awful lot from that experience. And I didn’t want to just let go of it. After he died I wanted to think of different ways of using that experience positively, rather than that just being a shut door and I don’t have anything to do with that any more. So it was something about... There was something in it about giving back, but that wasn’t all of it. It was also about making sense of my experiences, making meaningful and useful. 

And it was also about I had to re-invent myself. My role had been as his carer. That had taken all my time day and night. He’d been having quite heavy drug treatments at home and I was giving intravenous drugs day and night for quite a lot of, of his later time. And that had vanished and so I had to come up with a new way of being in the world. And it seemed that it was sensible to use the experience I had from old way of being to help make that happen.

Yeah. Yeah. Yes, it’s like you’d sort of been doing a job basically, that you could then turn to this use?

Yes. Hm.

The giving back part, I mean you said that was part of it. How important do you think that was?

Yeah, I mean I, it is, it’s good to be, to feel that you are able to contribute something, rather than being a, a consumer of, of health services. It is, it is good to be able to feel that you’re, you’re part of, of improving things. That is quite important. It’s not overwhelmingly important over the other things. I’m not in this just for that. It’s also because it’s fascinating and interesting and exciting, and I get to meet some amazing people that I like to spend time with, and I learn huge amounts from doing it. So there’s lots of things involved in there.
Like Kath, people we talked to commonly used terms like ‘giving something back’ after they had received publicly funded healthcare; as Richard put it, ‘I had this moral imperative to put something back because I was still alive after I'd been ill.’ Other common phrases included ‘making a difference’, ‘helping’, ‘being socially useful’, ‘contributing’, ‘doing some good’, and ‘doing something valuable’. Several people specifically used the word altruism to describe their motivation – Andrew, for example, felt there was ‘a huge well of enthusiastic altruism’ and researchers should not worry about asking people to get involved. Of course it is possible that people being interviewed may feel they ought to stress such altruistic motivations, but they are a strong and consistent theme among people we talked to.
 

Margaret feels she’s giving something back for previous research participants who made her care possible, and improving treatment for future patients.

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Age at interview: 63
Sex: Female
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And that's one of the big reasons why I've become so passionate about research because I realise that somebody, all those years ago, said yes. Said yes to those chemo drugs, said yes to the dose of radiotherapy in a clinical trial, and said yes to taking that drug that I took this morning, and I've just come to admire those people who have said yes to clinical trials and I think they're very special. And if I could thank them all for all over the years I would but they've meant a lot to me because they've got me where I am today.

And so is there an element of giving back then in your sort of participation in PPI?

Yeah very much giving back, giving back for the treatment that I got and the care that I received, and anything I give in PPI is nothing to what I get back out of being part of it and that's being very honest. But certainly I just see it as being a partner with researchers and helping to improve treatments and quality of life for other patients coming out of this right from the initial bit of what's done in the lab, right through to what it means in changing services and treatment, and my part might be very small and that but I think you bring who you are to it – bring your experience of being a patient and that's unique round that table. Everyone us has been a patient or, or been a carer, and the experience we've had of the impact of cancer and treatment and diagnosis on our lives, has something to say around that table with researchers as partners. I don't become a researcher, I don't become a research doctor or a nurse, I don't become a scientist but I bring something unique to the research and that has been exciting for me.
 

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David Z (a retired nursing lecturer) got involved for both altruistic and ‘selfish’ reasons after his stroke. It brings together his work experience and his love of volunteering to help others.

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Age at interview: 68
Sex: Male
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Well there’s multiple components. I went with the VSO because I came to a point in my career. I had initially, as during the training, thought that I would like to do this while it was new, when I was completing my training and I was advised by my principal tutor to get some experience before I went. I then moved into a senior role in an operating theatre. I was very comfortable. And I really got into a rut and I realised that I needed to get out of the rut. I saw a letter from VSO and thought “oh I can do that”. 

So there was a sense of challenge and it was a real professional challenge, but that job that I did gave me immense job satisfaction. I got more job satisfaction from that role than any other job that I did. And so I benefited. There is an altruistic purpose, but there’s also selfish element. When I was in Ethiopia I had a religious conversion and so you might say that there’s also a religious element. Well the thing that motivates me is that I know from personal experience that research benefits practice. That practice can only be developed through trial and analysis of what works and what doesn’t work and so I can bring together my professional experience, my personal experience of caring for stroke and my enthusiasm for living, and I enjoy doing the role. I get an immense pleasure from it. As I say there is an altruistic part, but there’s a very selfish part as well, because I feel that I’m doing something and that I’m engaged in something that is benefiting others.

Is there anything you think I’ve missed that you thought you wanted to say this morning before I arrived?

I don’t think so. I think you’ve given me the opportunity to bring out all the areas that I considered in advance. I’m comfortably settled now I’m retired. I enjoyed my work throughout my professional life and I don’t want that experience that I had to be wasted, and the fact that I was unable on retirement to go back overseas with VSO, which had been my retirement plan, meant that I was looking for a new direction and I found it through stroke, but I have benefited as much as I hope I’ve contributed to improving the life and experience of other people. So for me, it really completes the circle and I’m able to draw on life experiences, professional experiences and I’ve got the time to do it.
Behind these altruistic motivations lie a range of values and feelings. These include empathy and understanding for other patients, a sense of obligation to their fellow citizens and wider society, and a responsibility to use their time and skills to help others (for example in retirement). David Z also mentioned the role of religion in his voluntary work, which had included VSO (Voluntary Services Overseas). Others also enjoyed wider voluntary activities, including Ben who was a Beaver Scout leader, Alan and Rosie who had volunteered with support groups, and Stephen who was fund-raising for the Teenage Cancer Trust. Ben originally joined a clinical study as a healthy research participant as ‘a favour to a friend’, but getting involved more widely had made him see things differently. 
 

Ben is from a medical family but it wasn’t till he got involved in research by chance that he realised how much he’d enjoy being able to help.

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Age at interview: 49
Sex: Male
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Do you feel that it’s sort of changed you and changed your, your view of medical research, now that you’re sort of in there and trying to recruit people or thinking about these patients that are suffering from…

Oh hugely. I come from a medical background. Dad and his three brothers and all my uncles were GPs. And I was answering the phone thinking that was, you know, great, Dad was getting up in the middle of the night to go and do visits as he was. But I never really thought of the patients, per se. Obviously I’ve been a patient, you know, myself occasionally, but had never really thought about research. Just hear the odd horror story, several years ago someone taking some pills and it didn’t go very well, all on the news and things like that. But other than that, no, not at all. But it’s just brilliant, being able to help and having a tiny little impact.

You say you came from a background where medicine was talked about. Do you think that has somehow seeped into you? And to your attitude, not only to the NHS but generally to caring for other people?

I’d like to say yes. But probably not. You know, it’s taken a long time for me to too involved [laugh] in this shape or form. But no I mean it’s always been in the background and so yes, we care about sick animals and things and sick people, but not to the extent of bluntly getting directly involved. All it took was a chance encounter and it opened a door and the flood gates were opened basically.
Many of the people we talked to also had a working background in teaching, healthcare and other public services, or came from a family of doctors or nurses, like Ben and Richard (who said, ‘My mum was a nurse, so it was drummed into me at an early age that health research generally is a good thing’). But equally others we talked to came from very different backgrounds: Tom was an engineer, Peter was a technology business consultant and Catherine a self-employed telesales consultant, and they all became involved following their personal or family illness experiences. 

Wanting to make good use of existing experience and knowledge – whether acquired through work or from experience as a patient or carer – was a common motivation. Sometimes people felt they had a responsibility to use their voice – sometimes literally - to speak for others. David Z felt that in his work on stroke research he could be ‘a voice for those who would otherwise be voiceless’.
 

Marney can represent the voice of others who’ve had a stroke but are less able than her to communicate. Her background means she can bridge the gap between them and the research world.

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Age at interview: 53
Sex: Female
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Yes, so the internet has been important. It started as a source of information to explore certain aspects of my condition and to make contact with other patients in the sort of virtual groups and so on and so forth. But it also improved my language skills which came in part from being able to take the time to compose a message to other people and to get it into the sort of format that I felt truly expressed what I wanted to say. So with time of course you were inclined to improve in any case, but actually working at it by having to tackle documents and things for attending meetings also gave a framework for driving the recovery, I think, and also because I was perhaps in better health or in a better position to give a message from a group who were perhaps coping less well, less easily. Equally I felt that both I must be very careful that I was representing the opinions of a group rather than just myself, but also that I got out there and gave it because I can totally see why for professionals or researchers the process of trying to tease out some of these issues, it's time consuming and frustrating and slow and all those things, which are precisely the issues that stroke patients are struggling with. They too are irritated that things are slow and frustrating and all of that. But yeah, I felt I was in a reasonable state to go and deliver the message and collaborate with people and to show that it could happen and to perhaps… It was to bridge the gap I suppose it's the best way of putting it; I felt that I could potentially bridge the gap between the two because I did understand something. It's the academic world and what it might be like to be attached to a university or a research organisation and yet I also had a huge amount of sympathy with stroke patients. So it was bridging the gap. 
 

Tom wanted to use his experience of lung cancer and being in a trial to help others. Working with a support group led to research involvement.

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Age at interview: 68
Sex: Male
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So I was trying to find something to do because I was unable to go back to my profession and I thought about these things that had happened to me and about being involved in cancer research. And I thought, 'Well perhaps I can use my experiences there to help other folks.' But I didn't know how to get into it. Now whether it was fate or coincidence or whatever but I received a letter from my consultant asking me if I'd be willing to meet up with representatives from a, a lung cancer charity where they wanted to start up a lung cancer patient support groups, and they wanted the first support group to be in [city]. So I went along to the meeting, met another couple of patients and representatives from the charity and we ended up forming the very first of their lung cancer support groups, patient support groups. And that would have been nineteen, by the time that opened it would by 1998, so after that things just seemed to expand and it virtually became another, another career in, in patient involvement.

Brilliant. And at that stage what were your expectations about what you'd be doing?

I had no idea really. I thought perhaps if the experience I had had with the cancer research trial, without being melodramatic about it, but if I hadn't had the opportunity of taking part in cancer research then I wouldn't be here today. So it seemed to be a positive thing to, to try to be involved in and to perhaps encourage patients as well to ask to be involved in clinical trials. And it just all sort of developed onwards you know.
 
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Making the research better and reflecting the questions that really matter to patients is what motivates Helena. It is frustrating to be told what the research question is by people with no experience of the condition.

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Age at interview: 43
Sex: Female
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In my condition all the research that is done just keeps going down the same path again and again.
 
…..And that’s why I'm then passionate about PPI because my entire motivation is, it makes the research better. I don’t really, you know if somebody wants to do a piece of research on something – really, really specific about genetics and it would cure my condition and that’s fine, then I don’t need to analyse every little part of their research protocol. But I do need to decide whether they should be doing it at all because that makes it worthwhile whether we spend the money and, I do need to be involved in anything else where huge assumptions are being made or, and just deciding what to look at.
 
…..To me it feels like PPI is at the stage that research, gender research, was at in the fifties where mostly men did the research and they often did research on women and they didn’t really get what was going on. So you get, it was almost like being in the Victorian age where, you know I don’t whether it's actually true but there's an apocryphal thing about an anthropologist who went to wherever it was they were studying, and they found that the native women had a period. They did the strange bleeding thing every twenty eight days. And he said, he literally wrote back and said, "This is very strange that this tribe does this; thank goodness our women don’t do this." Because he's this Victorian guy and he just hadn’t asked any women.
 
And that is kind of what it feels like. It's just not getting it.
 
…..So when I was doing the research where I was the participant and people were asking me questions, to take that kind of analogy a little bit further, it was a bit as if they'd worked out the women – like imagine a whole bunch of men doing research on women – and they'd worked out that women did have periods after all but they heard that it was every twenty eight days. So what they decided was important would be that everyone stuck to twenty eight days and obviously what you want as a woman is to make sure that it's exactly twenty eight days, but if it's not exactly, you're not really a good patient, so we'll do something to make that OK. And it, and it felt when I then got involved in research as a PPI person, as in shall we ask, let's ask some patients about this. It felt as if people were coming to me and saying, "This is the research we're doing; we're going to do some research to make you have your period twenty eight days exactly apart, that’s a given. Can you look at the information sheet and tell us whether we should the word menstruation or period." That is what it feels like. And it's like I wanted to strangle you. Why are you asking me the wrong questions? What I actually would like you to research is some painkillers because I get really bad cramps. And actually that, oh yeah well maybe, maybe we'll think about that later but first of all we've got to get your period to twenty-eight days because that’s the most important thing isn’t it? And that’s what it felt like in my condition, talking to researchers who didn’t get it. And I think, and I don’t know whether that’s the case for other conditions, it may well not be, I suspect that everyone's different, but that’s the way it felt and that’s what frustrated me being a patient on the other side, and made me realise that it was worthwhile doing. To do PPI stuff.
Helping others by improving research is a long-term project; it may make a difference to people many years down the line, people you will never meet. Anne talked of ‘the knowledge and the feeling that you're going to help somebody somewhere, maybe in the future, but at least you're putting, as a friend tells me, a brick in the wall.’ The idea of putting a brick in the wall suggests how an individual plays only a small part in a collective contribution.
 

It can be hard talking about cancer, but it’s a way to help others now Stephen can’t train as a doctor.

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Age at interview: 18
Sex: Male
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Does it have a sort of an emotional cost, the PPI for you? What would you say?

Yes. Because obviously… I’ve experienced cancer, obviously it has its afflictions and obviously kind of having to kind of discuss it so objectively, some of the time, can be quite, yeah quite hard. But, at the same time, I think kind of benefits outweigh any negatives and you’re there to kind of help out and improve research and kind of make less emotional concerns for patients in the future. So I think that kind of outweighs everything.

As I say all this is up in the air, because my long-term health is in doubt. So I’ve decided not to study medicine, but originally, yeah, medicine and kind of still having this kind of patient and public kind of backdrop probably. I think they’ve complemented each other quite well.

Do you think the involvement has made it some way, made you change how you think about yourself?

Yeah, I’ve always wanted to kind of help others and become a doctor, but doing it kind of indirectly through research... it’s a different way of doing it because the stuff is not personal one-to-one helping another person, but it’s still a way of helping others, and helping others probably on a kind of grander scale and helping more people you see. So I think yes, that’s helped me a lot.

What have you particularly enjoyed about taking part over the last six months? What have been the kind of highlights of the things you’ve really enjoyed or perhaps you’re naturally good at?

I just like the kind of social interaction with all the different people you get to meet and then, the main thing is that it’s for a kind of good cause, and you feel like you’re making a difference and that’s the other important thing. 
 

Richard enjoys being involved. At first it wasn’t always obvious how he was making a difference, but now he can see how research has been improved.

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Age at interview: 54
Sex: Male
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I've never really given much thought as to why I'm still involved with PPI except for the fact, I suppose, that it's something I enjoy doing. I genuinely enjoy doing it. And also, more and more often, it's something where I feel useful. In the early days I really couldn't see how I was making any difference at all – perfectly possible I wasn't making any difference at all. But even how I was contributing, because we'd have a three hour meeting and I'd only speak the three times, and it would be fairly brief. So wasn't quite sure, and again I think one of the tricks of getting to grips with PPI is to learn that you won't make an impact immediately, you just have to be patient as all patients have to be. But I think, I think more and more now it’s, I stay involved because I can see that it does make a difference that PPI does add value to research and that research is improving the healthcare and the treatments we offer to patients right across the board. So there is this feeling of being useful and, in my case, of putting something back. My mum spent her whole working life working for the National Health Service and I've certainly had great value out of it myself because I'm still here to tell the tale. So you just put something back.
The issue of whether people should be paid for their time involved in research is discussed in more detail in ‘The costs of being involved and payment’. For some people being paid for involvement seemed inconsistent with being altruistic and wanting to help others. Catherine said, ‘I'm doing this to help and I think being able to influence is the best payment.’ Tom said he was ‘grateful that I was still alive in the first instance and totally grateful as well that I was still able to get involved in something like cancer research.’ Anthony described involvement as ‘an opportunity, a privilege’. Some were surprised to discover that payment was offered.

However, some others felt payment was important and didn’t make them any less altruistic. They were concerned people shouldn’t be made to feel guilty for expecting payment. 
 

Sharon feels payment is not why people get involved, but it demonstrates that their contribution and time are valued.

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Age at interview: 44
Sex: Female
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I think there, yeah there's an attendance fee so you can actually, with the Medicines for Children, so you can actually claim an attendance fee. I think it's difficult if you – so that's for the face to face meetings, which are over two days. And then for other meetings I think it's difficult because it's often a different person who's arranged the meeting and therefore they probably don't have in their budget consumer's expenses other than their travel and their expenses rather than their time. So it's a difficult one. And I think most consumers probably don't mind giving time, but can't afford to have any expenses and I think time over two days is different to time over an hour in a telephone call, but that's my view.

And do you think that people should be paid for doing PPI?

I think it's really difficult. It's, but I think there seems to be something about being paid and putting value on their role by being paid. I don't really know what's the best way forward for that because it's nice to think that you do it because you really feel passionately about the role, but yet you're probably the only person on the committee who it’s not your job and you're there for – it's quite nice how the Medicines for Children Research Network do it by giving you an attendance fee when you go to a meeting, especially when you've taken annual leave to go to a meeting because I don't think anybody else would take annual leave to go there. So, so yes you could argue that yes they should, but it shouldn't be the incentive to do the role if that makes sense?

The role shouldn't be about the money should be about the person doing it. I think it will change. I think, generally, people will be paid more and more and there’ll be an expectation that people are paid and that's probably right. I was quite lucky, I could probably afford to do it – just, not easily – but I probably could afford to go and not need that income or not mind taking an annual leave day.
 

Janice gets paid for some tasks and not others but it works out at less than the minimum wage. She does it because it’s rewarding to make a difference.

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Age at interview: 66
Sex: Female
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Well, all the things I've been involved in they've all been meeting your expenses. And I think that's always been my, my bottom line. That seems absolutely reasonable. Research ethics committees have never paid people for attendance, and I went into it knowing that, and so that was never an issue, and travel and everything was always paid. For the Research for Patient Benefit, they do actually pay a fee for the reviewing. My husband says it works out at less than the minimum wage per hour, but again it's more about it being a nod in the direction and that's not been a problem. And then, obviously, the other thing you give is time, but that it is absolutely more than balanced out by the fact that I've always really enjoyed doing it, that sometimes it's actually been exciting in the sense that, with drugs trials you've sometimes been at the beginning of something and you've thought, 'Oh something might come of this.' And I mean, very often it doesn't of course, but just the thought of, 'Wow this is the way they're working, it's so exciting, I'm really glad I know about this.' So, and I suppose the sort of intellectual challenge of getting your head round various areas of knowledge and that's particularly true of clinical trials, but it can be true of other sorts of research as well. And I really do love a challenge and I love feeling I haven't finished learning and there's more to know about. And that would more than outweigh any time that I spent or the time spent is part of the excitement really. And the fact that, you know, that the world is moving on and that there are, you see pieces of research and think, 'Oh I'm so glad somebody's realised that really matters.' 
As Janice suggests, there is no simple difference between doing something for personal satisfaction and doing it to help others; knowing you are doing something that makes a difference can be a huge source of pleasure and reward in itself. 
 

Involvement work is interesting, but Helen also gets ‘secret contentment’ from knowing she may have made things better, even for one person.

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Age at interview: 41
Sex: Female
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I think a lot of it is because, I - well I've done so much, and all of it has been interesting and there is a real need, I suppose, to scratch that intellectual itch on occasion. If I can't do something interesting in work then you know, I have so much free time and I want to be doing something interesting with some part of my life. But, there is also - I come back constantly to the day when I actually signed the patient information sheet to go on to the clinical trial, having spent months of being terrified, and having spent months getting people to explain things to me, and thinking ‘if by being part of some of these projects’ and, ‘if by’ sort of, you know, ‘sticking my neck out and raising my hand and asking difficult questions as a governor of the directors, I can actually make things better, even for one person’ - ’if one person gets Alemtuzumab who needs it, that's brilliant’. If one person ends up at the hospital where I'm a governor, not being you know, harmed by the medical treatment that they have, then that's a good thing to have done. And you know, it's a secret pleasure. It's not something that I put on a t-shirt and walk down the street expecting people to fall at my feet and worship me for. It, it's, I like - I might be quite a gabby person but, I'm quite a secret person, and I just like that secret contentment of knowing that you might have done some good. Because, you always know when you've done something bad but, you never quite understand when you might have done something good so, there's a secret contentment of yeah, yeah.
 

Carolyn has had great fun being a co-researcher. You don’t have to be ‘terribly altruistic’ to get involved.

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Age at interview: 69
Sex: Female
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And just one other thing I would add is that on one project where I was a co-researcher because it was looking at the impact of being involved. And we did lots of fixed groups and things and listening to the tapes something that struck me was how much laughter there was on the tapes. You know people were, they were describing their experiences and there was a lot of mutual support and enjoyment, and those people were, you know, they were laughing about – sometimes they were laughing about bad things as well as good you know, but mostly, you know, it may sound more than paradoxical, but, you know, this stuff can be fun. And we're not all in here because we're kind of, you know, heroic martyrs to, you know. The notion that you have to be terribly altruistic to do this I think is false and you know we get something out of it and that's perfectly fine. I'd be suspicious of someone who said they didn't, you know. I'd be worried in case someone was on a crusade, you know. So those are the things that I'd say.
See also:
Reasons for getting involved – personal benefit
Reasons for staying involved and wider benefits
The costs of being involved and payment
Messages to other people who are involved or thinking about it

Last reviewed July 2017.
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