Well I think that I would just say that I would thank them for being involved and I think that their views are really important. And I think that obviously I can’t speak for every researcher, but at the end of the day, we’re trying to do our best for patients, trying to get to the truth in science; answer difficult questions and we’re trying to do the best for treatments and that; and sometimes they’ll have to just accept sometimes our judgements on face value; we can’t explain everything in great detail to them all. But the main thing is I would encourage them to get involved. I would thank them for their involvement and I would say just sometimes you may have to respect our judgement in complex issues where we can’t explain everything.

Well I think that if one was trying to get the impact of involvement then I think there’s, presumably there would be interviews and questionnaire based methodologies that would be, would be saying. I think that, I mean I think that obviously if patients were involved in one study but they weren’t involved in another study, then you could look at the effect it, the effectiveness of the outcome. So, if for example, one was designing a rehabilitation programme and in one study the patients were involved, another study patients weren’t and then, and you looked at the outcomes or you looked at the effectiveness then, you could look and see whether, you know the outcomes were better in one study rather than the other. But, I suppose in terms of so but I suppose evidence in relation to patient involvement may largely be based on what patients, how they felt the benefit from that. But, as I said you could, in theory have two programmes of intervention one that had patient involvement one that didn’t and then look at various outcome measures in the two.

And would there be any worry that the patient input would kind of jeopardise or compromise the scientific robustness or rigour of the study?

I shouldn’t think that would be a major problem. I think there’s obviously if patients say; insist and say in a questionnaire of being adapted or some item being put in and where that would then compromise things or make the data collection a bit messy. One can see with a few situations have objected to a particular drug being there or and there was good academic reason. So there may be a few instances where there may be a conflict and there be an objection, but I suspect that with good communication and with good explanation most of those things will be ironed out. But in theory where you’re going to involve another party then there’s always scope for disagreements and different perspectives and differences of opinion.

Well I think obviously when I’m talking about representative I meant maybe a patient’s spouse and maybe they’re representative of the patient. But yes, but you’re right. If you have one or two patients on a panel say, an advisory panel for a research study, a clinical research study, then the issue rises how do you know that those two patients are representative and this is just, this is just a general issue. And I think to some extent that if you have a, say a representative from an organisation so for example say for Alzheimer’s disease somebody from the Alzheimer’s disease society,

They would have been speaking to lots of patients in theory and so they should be able to voice the concerns or the views of lots of patients in theory. But and that’s not the same thing as having a patient themselves obviously. So it may be useful to have both a patient who’s actually been through the illness condition in question, plus maybe a representative from a patient organisation who’s been speaking to lots and lots of patients and can give a more consensus view because you may have an individual patient who has got very strong views for/against something in the study and that may not be representative of all the patients. And, as I said you may have patients on the panel who lack insight or have communication problems or may have personality problems secondary to the brain, say its brain damage. So there are all these issues which unfortunately are there. And to that extent if you have a representative from a patient organisation provided that representative themselves wasn’t, you know didn’t have major you know, communication or memory or other problems, then that might be one way around it.

Yeah. You said there that you could have; what you said a person representing a patient organisation.

Yeah

And you said that that’s not the same as having a patient.

Yeah

Why’s that not the same?

Well it’s because obviously if you have say a representative who’s never experienced the illness then obviously they’ve talked to lots of patients who have that illness then they’d get consensus views sort of thing. But I think the patient themselves will have had the, all the distress of the illness and been through traumas; been through treatments; been through diagnoses, investigations and they’ll know exactly the pain and the. And so there’s always that balance between the individual who’s been through it all and has got quite vivid and often very distressing memories on the one hand; and then on the other hand somebody who’s maybe talked to lots and lots of patients and can give you a broader view.

Well as I said the incentive may be that you’re more likely to get a grant, a successful grant if you have that as a very active part of it which is more or less required. But obviously the incentive would be; the main incentive would be that you’ve got to a meaningful study which is going to get to the truth of a condition and is going to have the best possible treatment for patients. And so that can, that’s always the. Any researcher who is interested in finding out the truth about a condition, what the real nature of it is. And any researcher, especially a clinical researcher’s involvement, and treatments, wants to get the very best treatment for their patients. So I think that if you, if those two things are there then one can’t really argue.

And so I think that, I think grant giving bodies see that as just a sensible way to ensure a high quality research. But there is an element where, you know it is maybe a reaction over the last three or four years to a general movement that patients must have a stronger voice in their treatment; in research, in whatever; in the whole areas of activity the public need to be, have stronger representation. I think this is one of the things about the last five/ten/fifteen years is that there; the voice of the public could be heard is now partly through technology is something which is much more there, much more in evidence.
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So given that it’s a requirement for funders?

Yeah

Is there a danger that some researchers might just do kind of a tick box type?

Well I think that that’s it but I think the funders will probably be aware of that and I think that ; I think that they would often be quite specific in their requirements so there would have to be a panel, often a, you know the advisory panel would consist of three or four patient representatives. So I think it would be difficult for researchers just to get it off as a tick box sort of thing yes I’ve done this; I’ve done that. And I think that, I think that if you have patients on an advisory panel or patients who are representatives, then by, then they may be very vociferous or they may not, so that maybe vary from one to the other. So I think it’s, it’ll be a bit difficult to just to avoid any significant involvement just by ticking some boxes.

And do you think that there’s sufficient evidence about the impact that involvement has on research?

I suspect there isn’t now. The problem is that I’m not aware of any and I think that that’s an important point that, if one’s going to make rational and make significant judgements or decisions about involvement, it should be evidence-based and it should be based on what people think about involvement. Now, as I said, that will vary depending on the patients, depending on the type of study and, etc., etc. so, a number of those factors. So I think that, I think if there was some research on patient involvement and some hard evidence one could fall back on then, it would be easier for people who want to make a decision about involvement to actually, to make a more evidence-based decision. So I think from that point of view research could be important.