Peter

Age at interview: 56

Brief Outline:

Peter became involved as a patient advocate after he was diagnosed with lung cancer. He has been doing patient and public involvement in health and medical research for about eight years.

Background:

Peter is married. He formerly worked as a business consultant, providing training and consultancy to large technology companies.

More about me...

Peter was attending a support group run by a charity for lung cancer patients when he found out about patient and public involvement (PPI). The support group was quite useful for him when he was ill, but when treatment ended and he was feeling better, he felt he didn’t really need it anymore. He wanted to continue doing something to help others, so when he found out the charity was also involved in research he volunteered to be a patient advocate. 

Initially his role involved commenting on participant information sheets and discussing proposed research with researchers. When he reviews research documents, Peter thinks about what the benefits of the research will be and what will happen next when the study is finished. Whilst he still does this, his role has changed to include things like deciding which types of research should be given funding. He has also been involved in discussing the cancer research agenda, for which he had to attend three meetings a year. He enjoyed doing this but was frustrated because a lot of decisions and changes were made by researchers between the meetings that he wasn’t involved in. He said this type of PPI could be seen as “quite far removed from what patients go through” and as a result it’s more difficult to see the impact his work is having.

Because he enjoys doing PPI, Peter often finds it hard to say no when he is invited to become involved in projects because he wants to help out where he can. He thinks people need to be careful not to “over-commit and then under deliver”. He sees PPI as a voluntary activity and whilst he thinks patient advocates’ costs should be repaid, he doesn’t think they should be paid for doing PPI because this could lead to people not fully committing and moving on to other projects that were better paid. 

Peter said PPI is stimulating and it allows him to use the skills he built up in his career. He feels he is doing something valuable, contributing to society and making things better for cancer patients in the future. He thinks children should be taught about PPI in schools as “an activity they could get involved in as good citizens”. He said he would encourage both patients and researchers to do PPI because there are significant benefits to doing it. Along with another patient advocate, Peter devised a training programme to train researchers about PPI because they felt the research community could be better at including patients in research. The training was very successful and the researchers who attended said they changed the way they were doing PPI and felt more confident in involving patients. 

Peter has found involvement in national research strategy interesting but challenging.

Well I probably accidentally developed a second career in PPI. So I quickly got involved in more of the governance issues. So one of the things I really enjoyed was I was asked to become a member of an advisory group to quite a big research collaborative, which was doing research into supportive and palliative care throughout the UK. It was a collaboration between three big research universities in the UK and they had an advisory group set up. So I was involved in that, a member of that group. That was quite a strategic role because you were talking to the kind of chief investigators at all three big universities about their way forward and about their strategy and about how they were collaborating – that was very interesting. So that was probably a more strategic level, very much about governance. And round about the same time, slightly after that, I was invited to join the National Cancer Research Institute Board sub-group for a clinical and translational research, which is a UK body of course; and that's pretty much the top table of cancer research in the UK, just one level down from the Board. And we met there three times a year and that was the great and the good of the cancer research world. And I had the opportunity there to talk about really the cancer research agenda and the priorities, the initiatives and the things that were going to get funding, things that were going to get attention. And that was one of the most interesting roles that I've had, although it was one of the most difficult from a PPI point of view, it was one of the most difficult to make a real contribution because of the way it was structured, the way it was organised.

Can you tell me a bit more about that?

Well they didn't meet very often for a start; they only met three times a year. And before we met we were issued with all the Board papers to read, which were always interesting, complex, some of them quite technical. And we were asked – what was good about it was we were asked what we wanted to talk about at the meeting. So you are given a chance to reflect on the papers and then come up with questions or comments, and by and large we did that – there were two of us sitting on this board – by and large we did that and we were always asked what we thought, that was good. 

But we always felt that a lot of stuff happened in between the meetings that we didn't really get a chance to see what that was so. And maybe that was quite a natural thing. Maybe that was just, that was everybody else's day job, so they just got on with it after that and actioned the points and developed the initiative and progressed the matter, whatever it was. And we didn't really get another update until we went back four months later and it looked as though an awful lot had changed and we hadn't necessarily seen it change. And that was probably a little bit frustrating because you, sometimes you felt as though you wanted to carry on the meeting outside the meeting. You wanted to actually to revisit the subject and go into more detail or contribute more, and you weren't really, it wasn't easy to find the way to do that often. So while it was really interesting and it was a great privilege to be involved at that level, it was quite hard to make a really telling contribution I felt. 

Peter describes the questions he asks himself when reviewing a research proposal.

I always try and cut to the chase with a research proposal and find out well what exactly, well what exactly is the question they're trying to answer? How many people does it affect? What will happen if the question isn't answered? What will happen if it's answered successfully? What will the next stage be? Is there actually a pathway to something good happening here or is it just going to stop? So it's not something I've done a huge amount of but enough to know that it's, it's quite an important activity. And it's an activity where if you really think as a patient or as a lay person you can pose some quite challenging questions to the researchers who've come up with the idea. And usually they quite like it, usually they quite welcome being challenged or being questioned. And occasionally of course they've said, "You're quite right, we haven't thought of that," so that, there is this, it's a key PPI activity I think definitely.

As well as making things better for others, Peter has met interesting people, used his skills and enjoyed himself. It has given him a sense of control after having cancer.

It's stimulating. It allows me to use my skills. I've met some really interesting people. I've met some, made some quite good friends from it. You do feel as though you're doing something valuable and particularly if you're not doing a day job that's important. You're doing something valuable; you're contributing to society in some way. And I suppose, at some level, you feel as though you're kind of trying to exert some control over the future. Having had a disease over which you had no control and was very random, you are now in a position where, well OK, maybe by doing something around PPI I might get some control and help other people in the future. So it's a combination of things, but I mean overall it's very rewarding. I wouldn't, I would have hated not to have done it, and I would hate to stop doing it, so yeah I would recommend it to anyone.

Peter never stops feeling like a patient but ‘it comes in bursts’. Staying in touch with current patients or getting involved in a particular study helps remind you of the reality of illness.

And it comes in bursts. I'm still a patient so I still have to go for health checks and things and in those periods I feel very much like a patient. And all the patient feelings that you had way back at the beginning come back and you're acutely aware that you're still a patient. But when those peaks have passed then you don't feel quite as much as a patient; you just feel like a normal person who's contributing as part of a group, which is, and that allows you sometimes to be more objective, I'd like to think. Yeah, I don't think you ever stop feeling like a patient really, but the intensity of it varies depending on what you're doing and what stage you're at.

And what about this issue about kind of being involved for a long time and how you can sort of retain your 'patientness', as it were, to bring to the table when you work with researchers?

Yeah that's quite a challenge because if you're fortunate enough to be a long term survivor of a nasty disease, then you naturally will forget, not forget, but you will become less acutely aware of your patient experience. So I think the way to keep that is to continue to remind yourself of what it felt like without making yourself anxious. But maybe to pick something that you're doing that actually will help to remind you. So maybe you pick a project or pick an organisation that's been very close to patients and that would serve as a useful reminder to you on an ongoing basis – what patients who are still ill or still have a battle or are still going through treatment or whatever, what they're having to face and it'll remind you of what you had to face at the time. So that would be no bad thing. Not always easy to pick and choose what you get involved in though.

Why's that?

Well just because that's the way things were. I mean I suppose you could seek something out. I suppose you could make it your business to seek something out that was very close to patients. And sometimes things present themselves to you and at a time when you either want to do it or don't want to do it and it maybe the right thing, it maybe the wrong thing.

Peter says you need fresh perspectives but also experienced people who understand science and research. He has learnt this through being involved for 8 years.

I think you need both, I think you need both. I think you need because the freshness of someone who’s recently been a patient is always going to be very valuable but, and that input's always very valuable and the passion's always very valuable. But I think also the experience of someone who’s been involved in research for quite a while is also valuable because you do have to learn a certain level of objectivity, which doesn't come easy when you're very recently a patient. So you have to learn that and acquire it and you also have to learn about the research process: about what a protocol is, and what an ethics committee is, and how funding happens. And if you want to contribute you have to understand these things and you have to be realistic about them. So that experience is also valuable. So I think you need both and there's always room for both I think. That's why we have to make sure that we're always doing something to recruit new people in to PPI because at the beginning I didn't have any of those things. I was a patient with my experience and my story and I knew very little about academic research or medical research or the processes or the funding bodies or how it works. But now, eight years down the line, I could argue that I'm not an expert, but I'm reasonably well versed on how it happens.

No label will ever be perfect and Peter thinks ‘PPI’ is as good as any. It’s what you do that matters.

I don't know because I think all of the labels have drawbacks and they're not quite right, you know, there’s something not quite right about all of them. So this is the debate that's been going on for quite a while. And service user was the kind of label that I came in with if you like, or patient advocate, then service user, and then consumer seemed to be flavour of the month, and PPI seems to now be the kind of overall label that's given to all of it. And frankly I think it's as good as any, I really don't get too hung up on it. It's what happens that matters rather than what people are called. And if PPI evolves as a term that people understand and they know what it means, then that's fine. I don't think it really matters.