So I really welcomed initiatives like the one that the Alzheimer’s Society put forward involving patients and mainly carers in research proposals. So what they do is they have your grant proposals reviewed not only by experts, but by hundreds of carers who rank the relevance of your study to what they have witnessed as carers and that first stage is important. And then if your application is awarded a grant and you can work on your studies, then two or three carers would monitor your work and this proved to be a really elating experience. First, on a personal basis, it’s really nice to share. Second, the feedback that you receive sometimes is useful for your research because you put things into perspective. The questions they ask are applied and practical which not necessarily improve the nitty gritty of your methods but, allows you to put things into perspective. So I really appreciate that scheme it worked wonderful for me.

OK. And can you tell me any examples of what changed after you’d had research reviewed by that panel?

Right. Examples are both positive and negative. The negative ones that in so doing, there is a push for research to be very applied and research which is applied loses the grip with blue sky ideas. If we only do what patients want or what the industry wants, then we lose the benefit of creative research. We do mundane work – necessary but not carrying out interesting ideas so we should be careful in not abiding by, completely by the view that people who are not expert should guide the research. The positive aspect of it all is that, and the positive is overwhelming the negative, is that once you have gone through these hurdles and you involve with them so you do your studies. There is very little in modifying your studies as such but you have to make sure that what you do is understood and criticise or appreciate it. So what this pushes you to is to make sure that when they come up for a day, the story you tell it’s coherent with your data, but has a flair of lay people understanding.

And one of the first points you made at the start of the interview was about how one of the negative aspects of involving patients, is how it would reduce the amount of blue sky thinking we could do in research.

Yeah

Can you tell me a little bit more about that?

Yeah. It’s not just, it’s not patients as such, is the idea that research should be applied. That now we have the knowledge exchange, so what is it you’re doing? Why? But if we had asked these questions to Maxwell* and he would have said, “Well I play with little rays, you know. He couldn’t say, “Oh yeah I do this because in ninety years’ time, somebody will invent TV,” this doesn’t happen. We have to take for granted that an awful lot of research is done on a basic level and we do not really know whether or not this would pan out practically. If, instead we abide by the rule, the idea, that industry leads the research or, patients’ needs lead research, then our vision is too close, is for years, five years down the road; we also need research which is risky, fancy, creative ideas which may or may not be applied; may or may not ever be used, which, though, would increase our knowledge probably. So the risk of having people with an applied view to have the only voice about whether or not research is valid, would kill the blue sky research. But it’s not patients or carers, it’s the general idea that users should decide; users should have a say, but this say should be shared because otherwise we only do what is often an immediate need. And what about research which doesn’t have applications which is very solid to allow us to improve our knowledge? So should we just close the Sanskrit department because it does no use? I hope not I’ll subsidise Sanskrit.

*James Clarke Maxwell’s research into electromagnetic radiation led to the development of television, mobile phones, radio and infra-red telescopes.

But as I said it’s very unlikely that the difference is made on the actual scientific protocol because that’s not the remit. However, for instance when the Alzheimer’s Society monitors come to vet our research, I have trained my PhD students working on that project to talk about their study in a way that people understand rather than pretending to understand the jargon in a five minutes conference talk. This is an incredible bonus. They have to answer questions about, “Sorry what is it that you do?” which is a bonus. The other aspect is that carers may add their own experience about the symptoms that you study from what they witnessed with the people they cared for. This doesn’t change your paradigm as such but it may add layers of understanding of what you’re doing. Sometimes it reassures you that what you’re doing is worth its while because they say, “Oh yeah this happened to me,” and sometimes the way of the different aspects of your research might change according to the enthusiasm or the frowning you receive from them. And most of all it has been a pleasure.

And do you ever feedback to them that, you know, you made a difference to my research when you said this or?

We do, we send the formal forms, but also we develop a personal relationship and so they show interest, real or not, they show interest and we are very happy to share. It’s gratifying. But as I say it’s very rare that you change your scientific paradigm because that’s not the dynamic of this encounter; you change the scientific paradigm if a professional researcher, a statistician, whoever understands the paradigm and says, “Look its better if you change this.” With the involvement of patients you change the way you express your questions, the way you frame it. You put things into context, into real stories. You see whether what you’re doing has any impact in the mind of people who lived through the turmoil of having a disease or having cared for somebody with a severe disease.

But what do you think about that, that the fact that at that stage maybe a patient or a carer would be reviewing your proposed research on ethics committee?

I would be very positive.

Hm mm

I think it should be mandatory as it’s getting to be. And I think though that these people should be carefully and highly trained; everybody should do their own bit to the better good. So I welcome, actually really wish to receive advice on how to better my relationship or how to improve on my debriefing procedures. On the other hand most of the times the discussion is between researchers and people who understand very little about what you do and impose their views and this is wrong.

Hm mm. And do you think when you say people who don’t really understand what they do, do you mean patients there?

No I mean people sitting on ethical committees who have the power of hampering a study, and most of the times the request that we got are bizarre. If you go to any kind of scientific gathering, most of the stories that people tell are jokes about their relationship with ethics. Their requests sometimes are jerk reactions, automatic. In one instance, recent we were coming out of a study, an fMRI study, an imaging study on verbal memory, remembering words. So we requested that English speaking people took part and ethic committee did not like it because it was discriminatory to people who didn’t speak English, so they asked us to provide a translator for people who should have taken part in the study but didn’t speak English. Unfortunately we couldn’t find very small translators, humans to put in the scan, little gnomes sitting in the scans. And these things are telling me that the relationship is going out of hand. By the same token our research has to be snappy and fast and we cannot just wait months and months for the power, to be, deciding whether we are worthy of an answer.