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Patient and public involvement in research

Tom

Age at interview: 68
Brief Outline: Tom became a consumer representative and started doing PPI about fifteen years ago. He works with numerous organisations, committees and groups in both health and medical research, and service delivery. His main research interest is in lung cancer, but he also contributes to research in other types of cancer.
Background: Tom lives with his wife. He is retired but formerly worked as an electrical engineers. Ethnic background: White Scottish.

More about me...

Tom’s interest in consumer involvement began after he was diagnosed with lung cancer. He took part in a clinical trial because doctors thought the other treatments available at the time would not have worked for his illness. Afterwards he was medically retired from his job and wanted to find something that he could spend his time doing. Tom had thought about his experience and wanted to translate it into research but didn’t know how. He was sent a letter from his consultant asking him whether he would like to meet with representatives and other patients from a lung cancer charity who wanted to start up a patient support group. He decided to join this local patient support group which started his career in consumer involvement. 

His first serious involvement in cancer research was with the National Cancer Research Institute (NCRI) where he was asked to join the strategic planning group to produce a report on lung cancer research. Since he joined the NCRI, he feels he has built up his involvement in various aspects of the research process at local, national and international levels. As well as being asked to sit on a number of consumer groups he was invited to be a co-applicant on a research proposal. Tom believes in the importance of having the patient perspective built into the research project. His PPI role has also involved sitting on trial steering committees, presentations, commenting on proposals, radio and TV interviews, newspaper articles and reviewing patient information sheets and consent forms. Tom feels it is difficult for consumer members to provide a ‘representative’ perspective. He feels he brings his own views to the table and not those of other patients. 

Over the years, Tom has seen significant changes to the level of consumer involvement in research. Researchers are now expected to involve consumers from the early stages of and throughout the research. He acknowledges that there may still instances where consumer involvement may be seen as tokenistic but feels that his contributions have been valued and has often found that researchers are extremely engaging and seek his opinion. Tom thinks that there are still challenges that need to be addressed in consumer involvement, which include increasing the involvement of minority ethnic groups and other hard to reach groups. He feels that if he “can help one patient have an extended life expectancy or a better quality of life for the time they've got” that would make him content. Tom would like to encourage other patients to become involved as he feels that consumer involvement is a positive and enjoyable experience.
 

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.

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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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.
 

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’.

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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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. 
 

Tom never expected to meet so many interesting people. It gave him a new direction in life when cancer stopped him working.

Tom never expected to meet so many interesting people. It gave him a new direction in life when cancer stopped him working.

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It's, the people I've met and the contacts I've made, the friends I've made – oh yeah it’s more than worth, that's more than worth the time that's spent, you know, doing your solitary reading and catching up, you know, the value and the contacts and people and friendships and everything far outweighs any of the disadvantages if you want to put it that way. Oh no, yeah I have no regrets in doing it, plus the fact you know, in a selfish way, it's given me an interest as well, you know because, you know, it was a case of when I wasn't able to work again, what am I going to do you know. I need to find something to do, I'd worked all my life and I know Helen has never said it but I'm sure she was maybe thinking, 'Well, you know, he's worked all his life, what's he going to do now you know?' And I, I couldn't really, well I enjoy having a, a social drink, I couldn't see me spending all my time, every day going between pub and bookies, you know. If I could afford it, anyway, so yeah there's been a lot of benefits for me, for me personally yeah.

Did you ever think this was what you'd be doing in our life?

Oh absolutely not, it’s something I'd never ever dreamed of, of anything like this so it was a total life change, you know, after , after having lung cancer, you know, a different direction totally. You know, 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. Yeah it’s been good. I've enjoyed it.
 

Tom feels he still has lots to offer even though his lung cancer was 20 years ago. In some situations he may be able to offer more.

Tom feels he still has lots to offer even though his lung cancer was 20 years ago. In some situations he may be able to offer more.

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Yeah, they still have, have a lot to offer. I mean I've been away, you know it's twenty years since I had lung cancer but I would like to think that I, there's still things that I can offer. I mean the treatment I got – the intravenous treatment I got – in many situations that hasn't changed; you know that treatment still, still exists today. Yes, there's a lot of new treatments which are oral treatments and everything else but for many, many people the intravenous chemotherapy treatment is still one of the basic treatments for cancers you know. So where there have been many changes there's still some things stay the same you know. But yeah, you know, whether you've been out of it and away from it you can still, you still have a lot to offer and in some situations you've probably got more to offer maybe because they've had all this time to reflect and things and think about things differently, in a different aspect. So yeah, you know, by all means, you know, whether you've been out of it for, away from treatments or involvements for years – yeah you know there's still a contribution to be made, yeah.
 

Over the years Tom has become more involved. His involvement takes him all over the world.

Over the years Tom has become more involved. His involvement takes him all over the world.

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Again it's through various organisation, different organisations where I've had invites and done presentations and I've done presentations in Milan, Paris. I was invited to, just last year, invited to Geneva for a European lung cancer patient meeting, which is still on-going but [coughs] there's, there’s involvement issues there about finance – how, how do you finance these things? [Coughs] Two years ago I attended the American Association for Cancer Research annual conference in Orlando and presented a, a poster there describing consumer involvement in cancer research in the United Kingdom. And we had quite a lot of interest shown in that because it was a, [coughs] a kind of different area than what they were looking at in America. They didn't, we're kind of unique in the United Kingdom having the, the sort of consumer liaison group involvement in cancer research and there doesn't seem to be the same, not that I'm aware of, in, in other countries and in Europe and in the US. And they were quite interested in, in the, the way that it was organised and co-ordinated which it didn't seem to be all the other advocates, as they called us over there, were representing their own particular group and when it got to research there didn't seem to be this co-ordinated movement of involvement of, of consumers in the production of the trial proposals and study proposals you know. So yeah part of it being, I mean I've had invites to go to San Diego to the, to the, also to the International Lung Cancer Conference in Australia but, you know, it's getting financed to do these things you know, which is, is very difficult but we'll keep trying [laughs].
 

Tom isn’t there to represent anyone. There are lots of terms but consumer or lay person are as good (or bad) as any.

Tom isn’t there to represent anyone. There are lots of terms but consumer or lay person are as good (or bad) as any.

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I don't particularly like using the term patient representative because I don’t go to meetings with a mandate from a patient group. My, what I say, what I do is my own personal views, it's not, it’s not mandated or influenced or anything like that, so I don't particularly like patient representative. Consumer is probably as good or as bad as any maybe. I mean there was other ones that we had once – what was it? Public partner is another one which, I don't know. Lay person I suppose is, is as good as any as well but then again that doesn't cover a lot because when way back many years ago when I was, at that time, the lay representative is the expression that this organisation was using. But what I was finding or what we found is, or what was happening was that many of the so called lay representatives were ex-medical professionals in some manner. So to me a lay person is someone who has no, or limited knowledge, of a particular subject but here were, there where these virtual experts but they were being called lay persons because they had been away from, what they were doing for three or four years or something, so they were classed as lay person. It's a bit iffy. So it is, it's a difficult one, you know, lay person, consumer – that's some of the names I've been called, but no I don't know what the, you know, everybody's got their own opinion of it. Probably for me consumer or lay person is probably as good or as bad as any.
 

Don’t be afraid to speak up; there are no silly questions.

Don’t be afraid to speak up; there are no silly questions.

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Go for it. Oh I mean definitely go for it. If you think about it and you wonder, 'Well oh I don't know, I might ask stupid questions and make silly.' There's no silly questions or no stupid questions – a lot of the questions you ask that you might think everybody knows the answer, half of the people who are at that meeting will be sitting there saying, "Phew I'm glad that question was asked because I didn't know what they were talking about." So don't feel in any way that you can't cope with it. Try it, get involved; if you don't like it walk away but don't be afraid to try yeah.
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