John

Age at interview: 59

Brief Outline: John’s primary research interest is in heart failure. He has involved patients by getting them to review information sheets and endorsing his research ideas.

Background: John is a professor of clinical cardiology. Ethnic background: White Scottish.

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John is a cardiologist and is particularly interested in the causes, diagnosis and prevention of heart failure. He has involved patients in reviewing information sheets and has attended some patient group meetings at his hospital. He said it was difficult to find patients to involve and to keep them involved as patients with heart failure are often quite elderly and usually very sick. He also said, ‘They’re not used to being asked their opinion on medical matters’ and felt they would be easily led to telling him what they thought he’d want to hear. 

There are some issues that John felt should be decided on by the public and not by the medical community. He described having the support of a group of patients was ‘a powerful weapon’ because changes were more likely to be made on the basis that patients wanted them rather than doctors. He said it was unlikely that most patients would come up with good ideas for research, but that it was important for researchers to get them to endorse their ideas. 

John thought the ideal patients to involve would be those with ‘above average intelligence’, but this wasn’t necessarily related to the level of education they had. He said researchers probably need to educate their patient advisors, who he felt would become more valuable as they gained more experience. 

A concern John has about involvement is that it is difficult to involve a diverse range of people and he worried that those with rare conditions might be more likely to get involved and perhaps have a stronger voice than others with more common problems. He also believed that patient advisors should be paid to ensure more people from a wide range of backgrounds could get involved. But he said it was important that patients should declare any conflicts of interest, which may include advising pharmaceutical companies.

To overcome the problem of how difficult it is to find patients to involve, John suggested an online directory of interested patients and members be developed. He would also like to see that all patients entering a hospital are informed about research and how they can get involved or take part. 

John says it’s important to have a good PPI process but ‘you could waste a huge amount of money on proving any effect’. Like research, PPI is a long term and complex process.

So I think that it’s a process, I think you just need to demonstrate that the process is in place. I think you could waste a huge amount of money on proving any effect. And I think if you want to spend money in this area, I think it’s much more important to spend it on the public perception of research and the importance of research. 

I would not spend valuable research dollars on Mickey Mouse ways of trying to demonstrate that a particular process ended up with a particular product. Because I think that the problem about research is - well another analogy here is something I hate which is ‘hole in one research’, like golf. You never expect to get a hole in one and yet so much of research is almost predicated on ‘hole in one research’. Most research, if successful, is a drive and a pitch and a putt in three. And if you get in in three then I think you’re doing great. But of course your drive, you know, it’s a long shot and you may say that’s really resolved nothing. I guess what I’m trying to say is it’s a body of research - And therefore I think that you should look at the process, make sure the process is right and I think the results will take care of themselves. 

John can’t think of any occasion in his experience where a patient has come up with a new research area but it’s useful if they endorse your ideas. That does not mean to say that he does not hope for such ideas in the future. Time will tell

With a patient group is, you’re just checking that what you think to be true, is true. The number of novel ideas that patients have generated for me to pursue, well I can’t think of one, and I regard myself as more active in terms of pursuing patients’ views on illness than most of my colleagues. I think that endorsement is a good thing to have… You say, ‘I’ve got this idea for some research’ and the patient says, ‘That’s a great idea’. Then you come up with the next idea and ‘Yeah, that’s a great idea’. There are not many ideas that doctors think are sensible that patients think are stupid, unless the doctor’s stupid.

John thinks people who get involved need to be smart but they also need some training. Some areas of medical research are too complex for training, but patient input can still help.

I think you need people – and I put this carefully – who are above average intelligence. That’s not necessarily the same as education. You could be a smart coal miner or a smart supermarket checkout assistant. 

I think in order to think beyond your own particular views about what’s important you do need people who are able to think through the issues and come up with what they would want for not only for themselves but also others who may be coming at things from a very different angle, for instance people who are older or much sicker than themselves. I think probably you do need to educate your patient advisors somewhat. As they get more experienced I think they become more valuable. I think the totally naive patient even though smart is probably of very little use.

Medicine is complex. You spend, 20 or 30 years getting to a certain research point. Trying to make patients understand all the intricacies can be quite difficult. So yeah, there are research projects where you really have no confidence that the patient is really going to understand what you’re trying to do. One reason still to talk to the patient is practical aspects of the protocol. For instance, I was at a research meeting this weekend and they wanted a patient to come up to each visit fasting. And they said, ‘That’s an inconvenience for the patient and it also means that the investigator’s got to try and see all the patients in the morning as opposed to spread through the day. What is the value of this fasting measurement?’ And it turns out that there was no real value, but people didn’t think it was a big imposition. But for a patient, for me as a patient, I would regard it as a big imposition having to come to clinic fasting from the night before - easy enough to ask for but actually quite difficult to comply with as a patient or off-putting. So you should still talk to patients just from the protocol implementation perspectivel, I mean ‘How can we make this protocol easier for you to comply with? What is here that looks easy for us but is difficult for you?’

Offering people compensation for their time might encourage a wider group to get involved. John would like to see posters in every hospital encouraging involvement.

I think there should be a financial incentive which overcomes the inertia. I think, also, a financial incentive gives you a more representative group because people who are willing to give up their own time for free are less likely to be representative than people who say, ‘Well actually this is inconvenient - at least they’re compensating me for the inconvenience’. Now I’m not suggesting you pay wild sums of money… You’re not doing it just for the money. But I think that if you can take away the disadvantage of participating – the consumption of time and the effort of actually turning up – if you can compensate for that financially then I think you’d get a better representation. 

Also, I think every patient who is admitted to hospital, or comes to hospital clinic, - make sure that either there is a poster on the wall or a video message on the screen or they get a leaflet in their hand, saying that the NHS does have this interest and giving them a way of registering their interest, encouraging them to do so. And with a little bit of trepidation, you know thinking about this financial incentive issue, obviously it would be a bit of a problem if we got ten million applicants the day after offering a fiver an hour. We need to think very carefully about that. The patient who can’t be bothered, if you could make them a little bit more bothered they’re possibly your best, most reliable patient advocate as opposed to people who have more extreme views.

Some patient advocacy groups represent the interests of industry. John thinks that’s fine, but it needs to be declared and they should not be seen as the voice of all patients.

I do worry as well about professional patients. There are professional patients out there often paid substantial sums of money by industry, which is fine as long as they’re not the only representative and as long as they declare their conflict of interest, which they don’t always. In fact they don’t usually, you have to find out. So I think their conflict of interest of patients is or could be a key issue.

Patient advocacy organisations often have a substantial income from industry. And so yes, they are there to promote the industry agenda. I have to say that industry has produced more innovations in care than government and that I’m, to that extent, on the side of industry. They have an important educational message both for patients and for the profession. But first of all they need to have a declaration of interest and secondly I don’t think they should be treated the same way as other patient advocates. They should be seen as a professional body of patient-advocates as opposed to representative of the more general patient population. So I think they have a role. I’m not saying by any means, I’m not saying ban them or anything like that. I think they need to be seen for what they are. They need to be treated differently from other patient advocates. And we need to ensure that, although they are the voice of a patient advocacy group, they are not necessarily voice of patients.

Diversity of opinion matters so having just one patient involved is ‘dangerous’, argues John.

I think it’s very dangerous to have one patient representative. I think you actually do need three or four from different backgrounds that can offer diversity and checks and balances on each other. Because I think some of them do come out with extreme suggestions and that may or may not be helpful. It may sort of tie the hands of the doctors and nurses round the table, who say, ‘Well, you know, this was the odd view from this individual patient but he’s our only representative and therefore we’re sort of stuck with it’, as opposed to three or four patients who would then offer us checks and balances and diversity of opinion. 

And it is that diversity which is important. If we think that there is a monoculture of opinion out there, then we don’t understand the problem.

And one of the criticisms that’s levelled at involvement is one about representation. And do you think that you need to have a representative set of people who get involved?

Well I think that you can make it so difficult that it doesn’t happen. So I think that you have to be pragmatic. I think the key thing is to have diversity and maybe a combination of gender, ethnic and age. Age is the big one. Making sure that your patient representatives are not all 45-year-old executives, I think is key. So I would say the one big discrimination is age. 

I think the patients are better on the sort of generic issues of saying well, you know, ‘From your perspective with your illness, what do you see as the main problems?’ They will tend to revert to their personal experience and that’s why it’s important to have more than one opinion there because different people will have different experiences. Some patients will put an emphasis on symptoms, some people will put the emphasis on ‘What’s going to happen to me and this illness?’ And other people will be ‘What’s my prognosis?’ Different things matter to different people. 

John would like to see more nationally coordinated mechanisms for finding people to involve.

I think what we need is probably a better directory of patient groups - I would like to, I guess, see a website and whenever anybody’s thinking about applying for a grant they should be, you know, [charity name], MRC [Medical Research Council], HTA [Health Technology Assessment], should actually have a direct link to a directory and that directory should tell you where geographically these people are, what their interest is, how busy they are at the moment. And you should almost be able to sort of do a web search and find half a dozen people you know and fire them an email and say ‘I’ve got this thing, I’d like your advice, are you ready and willing to give it?’ And I think also it’s the sort of thing that the HTA should pay a modest sum to the patient advocates for this valuable assistance they're giving us. 

From the patient point of view, you know, I think that if I was going to spend any money on this area it would be on this concept of trying to build up a national web portal where you could identify… patients who could help.