Dave A

Age at interview: 60

Brief Outline:

Dave became involved in PPI after his parents were both diagnosed with cancer. He works with various PPI groups at local and national level. He primarily works in lung cancer research.

Background:

Dave is married and has one grown up child. He is a retired science teacher. Ethnic background: White.

More about me...

When Dave’s father died of lung cancer, his friend told him about a local conference that was being run by a group of people involved in cancer research. It was the first time he had heard that patients and carers were being included in research in that way. He decided to join that local group, and over the last nine years has been rapidly drawn in to PPI in lung cancer research at local and national levels. He finds there is great value to being involved at both levels; he can discuss national issues with the local group and represent all members when he reports back, rather than just providing his own opinion. 

Over the years, Dave’s involvement has included tasks such as reviewing research proposals, developing protocols for clinical trials and regularly presenting research results. He feels there is a lack of understanding about research among the general public, so when people are invited to participate in studies, researchers have to spend a lot of time explaining the process to them. He would like to increase public understanding and thinks this could be achieved through televised documentaries focusing on the subject. 

During his nine-year involvement, Dave has seen both subtle and profound changes occurring in PPI. Lay people are more accepted than before and professionals expect to involve them. Whilst some professionals can be difficult to communicate with, Dave has always found those working in palliative care to be very attentive and interested to hear what he has to say. He thinks this may be because a key part of their job is listening to patients, a skill they carry this over to PPI. 

Whilst it is difficult to capture the precise impact that PPI has had on health research, Dave has noticed a shift in priorities as a result of involving patients. There have been changes in the breadth of research within cancer that he believes are the result of patient involvement, from issues surrounding prevention, early detection, and cancer awareness, to end of life care. Now that patients and members of the public have been involved in health research for about ten years, Dave thinks it is time to consider the aspects of PPI that aren’t working well. Lay people are well represented on committees throughout the world of cancer research, but few tend to be involved at the early stages of developing research. He would like to see lay members sitting on all trial management groups. He also thinks the issue of payment for PPI needs to be addressed. Currently, certain social groups are difficult to include because no payment (other than reimbursement of expenses) is offered. He is frustrated that people’s Benefits may be affected and thinks the government should make changes to allow hard to reach groups to have a voice in PPI. 

Dave says there are benefits to taking part in PPI including feeling good about your ability to give back and making a difference for other people. Having his opinion valued is important and has made him feel good about himself. He has met people he wouldn’t have otherwise and has made some good friends. He thinks everyone has a contribution to make in PPI and encourages others to get involved.

Patient involvement can help make studies acceptable to patients and information about research easy to understand.

So having decided whether or not the question is worth answering. Whether or not the patients were involved early enough in the process, you then look at the research carefully. Is it answering the question for the right population of patients? Are they included in the next chosen criteria for the study correct? Are the correct patients being recruited for the study? Is, is the treatment sensible treatment? Is it the kind of the treatment that patients could live with? You know, the side effects of any treatment, are they bearable and sustainable? Does it involve too many visits to a hospital for instance? Excessive amounts of travel? Are the, are the patients who are invited to join the trial being asked the questions sensibly and in a kind of language that they can understand? Are the patient information leaflets legible and readable for all the population. And if its patients who would struggle to read that kind of literature are they given the kind of verbal help that they would need, to make a sensible decision about joining the study?

So it’s all about, it’s checking that the question is right, that the right people are being involved and that the patients who work on the study really are informed and can consent to the trial sensibly.

Dave A compares his experiences of work with the Medical Research Council, the National Cancer Research Institute and a local involvement group.

The dynamics are interesting between the three groups were very different really. And very different make up. The trial management group at the Medical Research Council was a group of probably half a dozen clinicians and a couple of statisticians committed to solving a particular problem within the lung cancer world. Very welcoming and easy to work with.

The National group for the Lung Cancer Clinical Studies was a different group, because I’d been invited as an individual and I don’t think that the majority of people sitting in that room had expected even a patient to be there. So I had to make a place for myself as a, as a lung cancer patient, but also try to convince some of these people that I had a place at that table. And I think I managed that. I was, I worked for that group for five years until my time was up, and I had to be recycled.

The, the local group is the one that I always found to be the one that kept you anchored in the real world, because at that group there were about 30 members of cancer patients from all different types of tumour types within that, within that room and the real spectrum of people form ex coal miners, steel workers, all the way through retired professionals, prostate cancer, breast cancer, ovarian cancer, myeloma. 

But it was a chance to listen to discussions that, that real people, who had not got a clinical training listen to their experiences of cancer, and, it was always interesting then to take their views with me, when I worked on the national groups and worked for the Medical Research Council and if any problems or questions cropped up when I was on the national groups, I could go back to Sheffield, talk to my pals at the Consumer Research Panel, get their views and that helped to, I think to make my input to the national groups more robust and more meaningful. So I wasn’t just talking from the angle of David Ardron, carer for a lung cancer patient and a breast cancer patient in South Yorkshire. But talking as a representative of a wider group.

Both Dave A’s parents had cancer. A local friend told him about a research conference run by patients and he went along.

I got involved as a result of my Mum and Dad’s cancer illnesses really. Mum had breast cancer, 1994, radical mastectomy. Still alive and doing very well, thank you. And my father, about five or six years after that was diagnosed with lung cancer unexpectedly, very unexpectedly, because he was a non-smoker. 

And, as a family we nursed my father through cared for him through his illness, which lasted longer than we expected, I think, really. He lived for about three years after that. And, just, just after he died a friend of mine lives two doors away, a breast cancer patient, told me about a conference at Sheffield University which was being hosted by a group of patients, who had been involved in cancer research. And I was aware of patients and carers getting involved in service delivery issues, but I’d never heard of patients and carers being involved in research. 

So intrigued, I went along to the to the meeting and listened to cancer patients and carers talking about how they had helped with the management of cancer research projects and studies, and so interested, given my science background, science teacher for 22 years. So interested with that, that I actually joined this group of patients, a consumer research panel working through an academic department at the University. 

Anyone should be able to get involved, in different ways. Being able to listen and ask questions is the main thing.

I had some good advice recently, never forget that you’ve got one mouth and two ears. I quite like that. And I think the ears are very important and I think, I hope that one of the things I have done is listen carefully to the debates and the discussions and then contributed as I’ve seen, as has been important and necessary. 

Whether I’ve got a special skill set I’m not sure, but the, because there are greater and greater numbers of lay people getting involved in the, in the research world, the team of skills that we, that we bring to the table is, is becoming more comprehensive and we’re able to contribute, you know, you can find the right person to contribute to a particular type of meeting. And, well, the selection of individuals for different types of involvement I think is important. So as a patient or a carer, my belief is that everybody’s got something to contribute, but how you get these different people, how you make their voices heard, is, is the way that there’s sort of pyramid involvement has developed.

Not offering payment excludes some groups of people. But the government needs to address the problem of it affecting their benefits.

My feeling is that the, the amounts of money that would be needed to pay the, the lay people within the process are very, very tiny. A lot of lay people who get involved do not want any payment and they would turn it down. But I feel that if you don’t offer the payment and I think it should always be offered. If you don’t offer the payment, then you exclude some groups from that involvement and that’s the thing. If involvement is going to be sensible and relevant and, and pertinent then it should potentially be able to involve any member of the general public. For some people the time and the payments are very, very important. They need not just to fund travel, but it might be to look after dependent partners or children that need to be looked after. 

So I think it should be offered. It should be offered at a reasonable level to recompense patient’s input. And the question about whether or not that payment interferes with their benefit payments, so that’s another issue that’s important and I wish that the government would sensibly address that. Because it, the, there is some talk that anybody that accepts payment for involvement in, in, public issues of this kind, like cancer research, but other, other types of involvement, would automatically lose entitlement to benefits. That’s, that’s blatantly and obviously wrong. I wish the government would address that sensibly, to make sure that the hard to reach groups have a voice.

Dave A has met some amazing people. It has boosted his self-esteem and he feels valued. Occasionally it’s frustrating but usually positive.

I think the pros are obvious. I think the important thing is that patients make a difference, and if you feel as if you’re making a difference then, you will benefit from your input.

Making a difference is the important thing. Putting something back. From a personal point of view, you, when you feel engaged by these groups you feel as if your opinion is. You’re made to feel that your opinion is important. Then it has a massive impact on your self-esteem, and the role that you have in society, the fact that you can help to improve the treatment of patients within the NHS is a massive thing.

Other personal benefits, I mean, just the chance, there are some of the people that I’ve had a chance to meet as a result of my involvement is amazing and people from the Patient Carer Community, but also to rub shoulders with some very eminent clinicians and even politicians at times, has been, has been very, very good. 

As I say, I’m accepted at different levels by different groups of people, but you would expect that anyway in a broad society, not everybody is going to be happy with what you do or what your input is. 

But there have been times when I’ve walked out of meetings that I wished I never even bothered going near, but it’s been a minority of times, and even on those occasions it turns out afterwards, that, you know, your presence has made some difference to the meeting.

There are times when you have to present a range of different perspectives, some of which you might disagree with.

There are obviously times when there is disagreement, even within the patient public, public arena. I can, I can put a viewpoint at a national meeting, or a local meeting and get diametrically opposite views within those meetings, but I accept that and I live with that.

One of the things, one of the sort of problem areas that I’ve always had, is when somebody asks me personally to write a letter from a group and represent the views of that group. And that becomes more and more impossible to do. Because even if you think that, that a certain viewpoint is an obvious one. I always meet the person in the audience who proves to me that that viewpoint isn’t obvious, and there are good reasons why it’s not obvious. And I love that. I love that sort of level of debate, that debate reaches on that.

So I’ve shied away from representing groups with one letter. And the world knows that that’s how it works. Go and sit in the middle of the House of Commons during debating and you can see that and the patient and public involvement world is just like that. It’s just like the House of Commons. So it’s a case of at times listening to all of the views and deciding on the middle ground, the ground that works, not an easy thing to do. And, I guess one of the things that I’ve had to come to, to come to terms with is that my views have had to be subjugated sometimes by the views of the group that I’m working on, and chairing local and national groups that doesn’t happen. And I find myself arguing a case or a point that I personally might find difficult to believe in. But you’ve got to do that, and I think it’s important that you do that. So probably I hope that my two ears have worked better than my one mouth, but I’m not sure [laughs].

It never occurred to Dave A in the beginning that he’d end up in the places he’s been to.

It never occurred to me for one moment that I’d end up in the places that I’ve been to in the last, certainly in the last four or five years. From joining a local group at [university name] and expecting to have sort of some input into local research projects to the I guess, the most extreme place that I ever ended up being a speaker at an international symposium at the British Embassy in Tokyo, about patient and care issues in cancer research, was somewhere that I had never really expected to end up. 

But generally, wherever I’ve gone in the, in the world, and it’s been in the world now, I’ve been to the USA, several meetings in Europe. As I say I am finding that as members of the lay community, we’ve been accepted, we’ve been welcomed with open arms and we’ve been treated as equals at the, at the conference tables that we sit at.

Lay people are now accepted without question – but the more closely involved they are the harder it is to identify what difference they’ve made.

Some changes subtle and some more profound I think. I think, I think the profound changes are that now lay people are accepted into that world without question and people the clinicians and the professionals in the cancer world attend meetings and they now expect there to be a patient representative in those meetings. 

The more subtle and the more difficult things to tease out of that involvement is to try to work out exactly what the impact of patients and carers has been on that world. And it’s a question we’re always asked. I spend a lot of time now visiting research conferences and research meetings and, and talking to professionals and they immediately start to ask, you know, what difference have you made, what is your impact there, and that can be, that can be quite difficult to see really. Because we’re, I guess we are just one now of a group of multi-disciplinary people working on projects and studies, and to actually say which, which change you’ve been responsible for, is not an easy thing to do. 

Sometimes patients can make a positive difference just by being there.

But the beauty is, I think now, is that professionals expect us to be there, they know we’re there, they understand the needs, and wishes of the lay community and I think that their input to research meetings has changed as a result of our presence. Sometimes, even if we’re just there as a listener, not as an active contributor, but the professionals know that we are there, and they try to think from our perspective as well. And that’s made a massive difference, and you can see that, you can see that there have been big changes to research portfolios across the cancer world as a result of the fact that patients are in there, asking the question and saying, you know, this is what we think should be researched and changes have been made. I think I’ve noticed particularly changes in, in the world of prevention, early detection, raising awareness of cancer issues, and then at the other end of the journey, about end of life care issues, progression, survival and mortality and end of life care problems which need to be solved as well.

It’s important that patients are included in all cancer trials throughout the UK. But we need to start thinking about what aspects of involvement aren’t working and learning lessons for the future.

What we ought to be doing now, ten years or more into the process is asking the question which aspects of patient and public involvement haven’t been successful, and learning from that how can we build a model going forward which will make patient and public involvement as impactful as it can be, as it possibly can be. And I don’t hear those kinds of messages coming from, coming from the top people. I wish somebody would say, ‘This is the model of patient and public involvement that we would like to have. Let’s get on and do it.’

I think that in the cancer world, we know now, which, which aspects of involvement work. It’s important to have people on the committees, on the national committees, and that, we’ve achieved that. Virtually every committee in the cancer research world has got lay people on it. Where we’ve not got blanket saturation is at the very early stages of thinking about the research process and I have always said that one of my ambitions will be that every portfolio trial within the National Institute of Health Research would have had early input from members of the public. So a lay member on every, at least one, and possibly two lay members on every trial management group for every portfolio trial within the National Institute of Health Research.

I have opportunities, a recent meeting I was at [doctor’s name] lead clinician for the National Institute for Health Research was sitting in the audience, and I looked him in the eye and told him that that was my ambition, and I could see him nodding and smiling. I’m pretty sure that he agrees that that’s important. But how you build the, the groups to ensure that happens, is not simple. I admit it’s not simple, but it’s something that we can work towards and we’re moving towards it all the time. 

In the cancer world when I joined the MRC trail there was only a handful of patients sitting on TMGs. There are tens, scores, getting on for hundreds now of TMGs that have got lay people on them. It’s still not blanket. 

There are about something like 2,000 national portfolio trials in health research. So that is a big number, probably a quarter of those have had lay input. It needs to be more.