Richard
Age at interview: 54
Brief Outline: Richard has been a patient and public representative for about 13 years. He got involved after being diagnosed with cancer. During treatment, he kept a diary that was passed from the health professionals and researchers treating him to the chief executive of a national cancer charity, who invited him to help with some research about information-seeking habits of patients.
Background: Richard is single and formerly worked as a senior manager in local government before giving up work to do patient and public involvement. Ethnic background: White British.
More about me...
During his cancer treatment, Richard took part in a clinical trial. He kept a diary about his experiences, which he used as a way of keeping in touch with people. The hospital staff sent it to the chief executive of a national cancer charity, who then invited Richard to get involved in some research about the information-seeking habits of patients. From there he began to get invited to join other groups and committees. Initially he found it difficult to understand what was going on in the committee meetings he attended, but he had expected to feel like this. The committees started doing pre-meeting briefings in which he and the other patients could have a ‘dry run’ of what they wanted to say, which, along with the training he attended, helped him to find his feet.
Richard thinks the goal of PPI is to add value to research. His reasons for getting involved were to give something back to the NHS, but also to find out more about cancer research and treatment, especially the kind he’d had. The work he does is about two things: explaining research to patients and recruiting them to take part in research. He found he enjoyed it so much that he decided to give up his job to do more. Since then, he has been a co-applicant on funding proposals and a co-author on a research publication, which is he very proud of. He said the writing process was longer and harder than he thought it would be. In the end, the article wasn’t written in the Plain English style that he would have preferred, but he understood that the academic language it was written in was what the people reading it would expect.
Because discussion about research happens in groups, Richard said it’s difficult to measure the impact of PPI and to tell who changed what, but there are examples of where it made a difference. He mentioned trials that were failing to recruit until the information sheets were revised by patients, and others that were thought to be too difficult until patients made suggestions about how to improve them.
Over the 13 years he has been a patient and public representative, Richard has seen several changes in PPI. There are now more patients getting involved and they are better informed about it. He also believes that researchers are more knowledgeable about PPI and see it as an important and valuable thing to have. Richard said there are definitely roles in PPI for people to be involved in in the long-term, but he thinks that patients should move on to work on different committees and with different groups to keep things fresh. He would encourage others interested in doing PPI to do it, but to think about what they want to do and how they want to do it before they get involved.
Richard thinks the goal of PPI is to add value to research. His reasons for getting involved were to give something back to the NHS, but also to find out more about cancer research and treatment, especially the kind he’d had. The work he does is about two things: explaining research to patients and recruiting them to take part in research. He found he enjoyed it so much that he decided to give up his job to do more. Since then, he has been a co-applicant on funding proposals and a co-author on a research publication, which is he very proud of. He said the writing process was longer and harder than he thought it would be. In the end, the article wasn’t written in the Plain English style that he would have preferred, but he understood that the academic language it was written in was what the people reading it would expect.
Because discussion about research happens in groups, Richard said it’s difficult to measure the impact of PPI and to tell who changed what, but there are examples of where it made a difference. He mentioned trials that were failing to recruit until the information sheets were revised by patients, and others that were thought to be too difficult until patients made suggestions about how to improve them.
Over the 13 years he has been a patient and public representative, Richard has seen several changes in PPI. There are now more patients getting involved and they are better informed about it. He also believes that researchers are more knowledgeable about PPI and see it as an important and valuable thing to have. Richard said there are definitely roles in PPI for people to be involved in in the long-term, but he thinks that patients should move on to work on different committees and with different groups to keep things fresh. He would encourage others interested in doing PPI to do it, but to think about what they want to do and how they want to do it before they get involved.
Richard says it’s easier for patients to say yes to a study if it’s been designed around their needs. Patient involvement also helps ensure the right questions are asked.
Richard says it’s easier for patients to say yes to a study if it’s been designed around their needs. Patient involvement also helps ensure the right questions are asked.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Newspapers always love publishing stories about research, but as the bigger charities are well aware now, they have much more impact if you can stick a patient's story alongside it. Many of the patient representatives also have their own contacts with charities, who would be delighted to report pieces of research and indeed report research underway to assist recruitment. So that there are the practical things that patients can do, but, ultimately too, the patient perspective should help researchers keep focused on whether or not the question is actually going to be important to patients and whether or not their piece of research will actually benefit patients in the long run. Of course researchers need funding to keep them in jobs and university academic departments and so on need funding for research in order to, that research will improve their academic performance and how that's measured. But ultimately health research should benefit the health of the Nation, and sooner or later we are all held to account for that. And patients do have this knack of keeping people focused on what's the benefit for other patients.
Patient involvement in designing trial and leaflets about research can make it more likely people will take part. Richard has also helped set national research priorities for cancer.
Patient involvement in designing trial and leaflets about research can make it more likely people will take part. Richard has also helped set national research priorities for cancer.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Have you been involved in designing research or setting research priorities?
I've been involved in designing research proposals to a limited degree, but I've also been involved in designing research priorities, sometimes on a national level. The two things of course are quite different, but they are, they're both eye opening. One of the things I did in terms of a national priority, was a few years ago now – National Cancer Research Institute held a conference to talk about its next five year strategy, so all the partners in the NCRI were there, all the people who fund Cancer Research, and lots of eminent professors and so on. And one of the things that myself and one or two other patient reps picked up on was that all the people there were interested in funding research into cancer. But actually, if you go to the public and ask about cancer research, one of their priorities is of course preventing it. Nobody wants to have cancer if it can possibly be avoided and, partly as a result of that conference, what's now happened is that the NCRI partners, the proportion of money they've put into prevention has doubled, which I think is absolutely wonderful, but that was something that we initially raised as an issue and was discussed on a national level. At the other end of the scale, there are the really limited ideas in the sense that it's limited to the benefit of a few patients with a particular problem. So I became involved in a study that was seeking funding, which was around the issue of people who've had lymphoma, which is a cancer that I've had, who have had certain drugs to treat them, which I have had, who are current or ex-smokers, like myself; they are statistically more prone to develop lung cancer later on in life. So, what we were looking at was whether or you could design a study to ‘screen’ some of these patients regularly for lung cancer in order to catch it at the earliest possible moment. As it happens that particular study didn't get funding, so I've also had experience of where no matter how much PPI you put in it still doesn't get the proposal funded and I've had to share in the disappointment of that. One day we'll get there.
Richard was invited personally to get involved because researchers read a diary he wrote about having cancer and being in a clinical trial
Richard was invited personally to get involved because researchers read a diary he wrote about having cancer and being in a clinical trial
SHOW TEXT VERSION
PRINT TRANSCRIPT
Do you think you would have got involved in PPI if you hadn't been ill?
I don't think I'd have got involved in PPI if I had stayed well throughout my life. It's something that's been there at the back of my mind, but it only triggered when I got ill. If it were not for my illness, I'd probably have followed my career through as a local government officer and a school governor and playing rugby as long as I could, and all the other things that I was doing. So it, I think, for me personally, PPI has come because I was ill and because I was on a clinical trial. But it's not just being ill; it's the fact that I took part in health research as a participant, which has opened the doors to PPI.
Richard was curious about research and was interested to know more about his own condition. But he also wanted to give something back.
Richard was curious about research and was interested to know more about his own condition. But he also wanted to give something back.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Do you think you would have got involved in PPI if you hadn't been ill?
I don't think I'd have got involved in PPI if I had stayed well throughout my life. It's something that's been there at the back of my mind, but it only triggered when I got ill. If it were not for my illness, I'd probably have followed my career through as a local government officer and a school governor and playing rugby as long as I could, and all the other things that I was doing. So it, I think, for me personally, PPI has come because I was ill and because I was on a clinical trial. But it's not just being ill; it's the fact that I took part in health research as a participant, which has opened the doors to PPI.
Richard feels it’s important people are involved because they want to help research, rather than using it as an opportunity campaign.
Richard feels it’s important people are involved because they want to help research, rather than using it as an opportunity campaign.
SHOW TEXT VERSION
PRINT TRANSCRIPT
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.
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.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Richard was flattered to have been invited to be a co-author on an academic paper. He describes how the style of writing was like learning another language.
Richard was flattered to have been invited to be a co-author on an academic paper. He describes how the style of writing was like learning another language.
SHOW TEXT VERSION
PRINT TRANSCRIPT
We, ‘these results have been reproduced by’, not ‘we reproduced the results’. Everything happens by magic. But that's a style you have to learn and I suppose it's like learning another language. I wish things were reported in plain English, and it's a big theme of mine. Let's have trial results reported in plain English, so that the people who participated in the trial – because it's our results – can understand what we have done, what we have helped find out. But this particular journal, it was plain ‘Englished’ as much as we could, and I'm very proud of it. I am really chuffed that just once in my life I've been associated with a publication, a research publication. It's a long process, loads of emails, hundreds of them, and care taken over every single word. And then the footnoting and the referencing – that was like being, that was like being back at university and having to cite all the references that I'd read for a dissertation or an essay or something. It's something I've always hated.
Initial training is useful, but Richard thinks it should be ongoing, so you can work out what you need after some basic experience.
Initial training is useful, but Richard thinks it should be ongoing, so you can work out what you need after some basic experience.
SHOW TEXT VERSION
PRINT TRANSCRIPT
My experience of training in PPI now is that there is an awful lot on offer. The difficulty now is knowing what's good and what's not so good and, of course, something you don't know until down the line, what will have the genuine long term impact? My advice to anyone doing PPI is, they may be offered some training to start with, which is good and it's always welcome, but go away from it once you've done it, go away thinking, 'I need to find just two or three bits of this that I'm going to practise, that I'm going to use', and do it that way. And then once you've settled into your role, your job, your committee, your remit, your work – whatever it may be – after you've had a few meetings, or after you've had a few goes at the patient information, or a few questionnaires to look at, then start asking yourself , 'Well what is it I really need to help me do this?' And I think there has to be that loop of ‘what's the role you're being asked to fill?’ And ‘what training do you need to fill that role’. With luck most of us will have transferable skills and experiences to help us get started. It's then, how do you get from the basic level to the higher level? And you don't know that ‘til you've actually operated at the basic level for a little while.
There is quite a time commitment involved. Travel is always covered but some people may need childcare costs and other expenses such as printing and phone bills.
There is quite a time commitment involved. Travel is always covered but some people may need childcare costs and other expenses such as printing and phone bills.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Richard feels it’s right to be paid for involvement but it’s not enough to make a living. He doesn’t think people should do it for the money
Richard feels it’s right to be paid for involvement but it’s not enough to make a living. He doesn’t think people should do it for the money
SHOW TEXT VERSION
PRINT TRANSCRIPT
You could, in theory, do that now. Many people would argue that somebody in my position is getting pretty close to it. I know how little money I actually make out of it, so I know I'm not. But, certainly it's there in terms of the time allocation. And so if I were being paid all the time, at a hundred and fifty pounds a day, or whatever, you could make a living out of it. But the reality is that you're often only paid fifty quid for a day and that you actually have to do a day before in terms of reading a preparation, and a day afterwards in terms of follow-up on emails, and so on. That happens. So I don't think people do it for the money. I think there is the potential there to do it for the money and I would worry if that were to happen because I think that creates a whole different relationship. At the moment, people do PPI because they are interested in making research better, in adding value to what researchers are doing, and above all else, making sure that the answers to the research question are going to benefit patients. That's what drives every single person I've ever met in PPI. The moment we start getting paid a living wage for it, let alone a decent salary, that will change, and I think that will be a great shame.
Engage people from lower socio-economic groups by working with people who are already engaging them.
Engage people from lower socio-economic groups by working with people who are already engaging them.
SHOW TEXT VERSION
PRINT TRANSCRIPT
And have you any thoughts about how we could possibly engage seldom heard people in PPI?
I have often felt that the best way to find the hard to engage groups, is to go to the people who are already engaging them. So I tend to fall back on my professional background in social housing and the one obvious thing to me is to go to those social housing landlords, who specialise in housing particular ethnic groups, for example. If they are a social housing landlord, you are probably, not necessarily but probably, dealing with people from lower socio-economic backgrounds; people who don't necessarily have full education or qualifications, and you're also dealing with an organisation that has a relationship with these people – they house them, they collect the rent, they do their repairs, they know where they live. So to a certain extent, one would hope they are already engaged, and I think that's the way forward. There are other people, too, whether or not you can go to an organisation, like Joseph Rowntree, for example, who do the social research, and actually ask, "Can we do something broader?"
Freshening up committees with new members is always a good idea because people can become ‘comfortable’.
Freshening up committees with new members is always a good idea because people can become ‘comfortable’.
SHOW TEXT VERSION
PRINT TRANSCRIPT
People can stay involved by taking on different roles. The beauty of involvement is that there are other opportunities.
People can stay involved by taking on different roles. The beauty of involvement is that there are other opportunities.
SHOW TEXT VERSION
PRINT TRANSCRIPT
People getting involved these days are well-prepared, and researchers are more interested in what they have to say. But Richard worries there is a danger of ‘PPI’ becoming and end in itself.
People getting involved these days are well-prepared, and researchers are more interested in what they have to say. But Richard worries there is a danger of ‘PPI’ becoming and end in itself.
SHOW TEXT VERSION
PRINT TRANSCRIPT
If I were to apply to be a cancer representative on a clinical studies group now, which I did ten years ago, I wouldn't give myself the job if I were interviewing because I actually don't have enough background knowledge. I don't have anywhere near the amount that the people I interview now do. I think too there is more of a focus on outcomes again certainly in cancer, but also in other diseases. There is the knowledge that PPI does work, that it does improve the quality of research, that it does keep the focus on patient benefit. So I think there is more of a focus on outcomes not process. Very few people now tick the box – "Oh we have to run this idea past a patient representative; go outside in the waiting room, form a quick focus group and ask people to say yes or no." I'm not suggesting that ever happened in reality. I was part of one or two focus groups that came pretty close to that though. It is much more serious now, and it's much more focused on having genuine impact. I think the third thing I've found, which I, which worries me, is the issue of PPI as an end in itself. Partly these interviews, I think, are part of that process and it does, it does worry me to a certain extent. There is almost a PPI industry building up and people have PPI strategies, and whilst I understand why that happens, I think it's very important to remember that PPI – patient and public involvement – is a process, it's not an end in itself. And I think there is a danger of it becoming that.
Clinical researchers should involve their own patients. It’s harder for researchers who don’t have direct patient contact.
Clinical researchers should involve their own patients. It’s harder for researchers who don’t have direct patient contact.
SHOW TEXT VERSION
PRINT TRANSCRIPT
And it's a very glib and simple answer, but if you are a clinical researcher then the PPI people are out in your clinic and the way you get hold of them is to ask them. And the way to do it is to talk to them, then listen to them, and that is a glib, simplistic answer but ultimately, that is the reality of the situation. For researchers in laboratories it is much harder. For statisticians, for methodologists, it is much harder because they don't have the face to face contact with patients, but there are plenty of patient groups out there, and there are plenty of hospitals treating patients, and it still can be done. You just have to stop and think, 'Well actually what do I want PPI to do?' And that, to me, is the key – what role do you want the PPI to play? Then, from that, you actually move into, 'Well where will I find someone to do that? Who will help me?' And there are always people around. Just ask the questions and sooner or later someone will come up with a useful answer. It's a little bit like a research project of its own, I suppose. But that's the question I'm asked most often, ‘How do we do PPI?’ And I think increasingly there is an acceptance, not simply that it's now part of the process, but actually it's a good part of the process, it's a good thing to do.
It’s more important for Richard that research results in better treatment for patients than if it’s published in a very important academic journal.
It’s more important for Richard that research results in better treatment for patients than if it’s published in a very important academic journal.
SHOW TEXT VERSION
PRINT TRANSCRIPT
‘Patient and public involvement’ is probably the best description, but ‘PPI’ can be confusing. Richard says we need a better name for it.
‘Patient and public involvement’ is probably the best description, but ‘PPI’ can be confusing. Richard says we need a better name for it.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Richard wants to see research and data sharing for research really embedded throughout the NHS. The role of patient involvement is simply to support those goals.
Richard wants to see research and data sharing for research really embedded throughout the NHS. The role of patient involvement is simply to support those goals.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Before you get involved, think about why you want to do it and what you want to do. When you start, you’ll soon find you want to do more.
Before you get involved, think about why you want to do it and what you want to do. When you start, you’ll soon find you want to do more.
SHOW TEXT VERSION
PRINT TRANSCRIPT