Adam

Brief Outline:

Adam is a clinician and researcher, who has been involving patients in his research for about 24 years, but only recently began to do it on a more formal basis.

Background:

Adam is a professor of cognitive and behavioural neurology. Ethnic background: White British.

More about me...

Adam’s job is equally divided between clinical practice and research. He mainly treats patients with cognitive or sleep disorders, and his research is about a type of epilepsy that causes periods of forgetting. 

50 people were recruited to participate in a study Adam did and he has since kept them up to date with all aspects of its progress. Some were interested in becoming involved in commenting on the research, so Adam sent them the plans for the study. He considers this the first time he formally involved people in his research, but said he’d always based his work on the experiences of his patients. Adam thinks this involvement has changed some of the detail, but not the main principle of the research. But on a different research project he has been working closely with two patients whose concerns have taken the research in new directions. 

Adam believes involvement will make research better. He said patients may think of research questions that researchers may not have thought of themselves and will help them focus on the things that matter to the people living with the conditions that are being studied. As potential participants, patients might see problems with the research that the researchers may not have seen otherwise. 

Adam thinks involvement may benefit from being representative and therefore able to reliably capture the views of the majority of the people in the population. He thinks this could be done by encouraging people who wouldn’t ordinarily get involved to come forward, by getting their views through questionnaires and by being selective about who you involve, not just involving the first people who offer. 

Currently, involvement doesn’t take up too much of Adam’s time because it’s not difficult to involve patients when you’re a practicing clinician. He thinks it’s important to be a good communicator and be able to ‘translate the language of science’ and try to make people enthusiastic about what you’re doing and interested in it. In future, Adam intends to involve people at the early stages of research and he would encourage other researchers to do the same.

Even though he has a lot of clinical contact with patients, Adam feels involvement provides extra insights into how he can improve the focus, design and analysis of research.

Well as I say if you’re doing clinical research of course you’re always working with patients, you’re always involving them but I guess in my first few research projects I didn’t involve patients in the planning of the research it was essential to have their co-operation to do the research at all because it always involved a similar mixture of clinical assessment neuropsychology and imaging but I think what has changed from my perspective over the last ten to fifteen years is that it’s people have begun to involve patients not just as passive participants, but as people who have something important to contribute to the, to the earlier planning stages and subsequent review stages of research. So by wholehearted I meant involving not just as participants who get scanned or take tests but also as contributors to the, to the process by which research is planned.

Okay and what would you say the purpose of involvement is?

It has a number of purposes I think there are, there are questions which might not have occurred to the researchers but which will occur to the, maybe in the front of the minds of participants so it’s helpful to find out what it is that people with the condition are bothered by, we like to know the answer too, what are the questions that they would like to see answered by research. Then they may spot difficulties with the plan that has been developed and then the, once the research has begun to produce some data they may spot implications which weren’t so obvious to the researchers. So I think at least those three, well at least those three roles can be played by involving patients…

I guess it’s easier for somebody like me as research is very clinical because I’m used to trying to please customers really, I’m used to sitting in clinic with people and so PPI is in research a very small step from what I do clinically anyway. I guess that if you’re a bench researcher and your work is potentially very important and very valuable but much further from every day experience, every day clinical contact then, then PPI might, the relevance of PPI might appear less clear and the threat from PPI might be more alarming and because you might be afraid then you’re going to, you aren’t going to be able to pursue your, your particular precious ideas and you might, you may worry that it may be deflected in some other direction which you don’t fancy. Clearly there are, there are kinds of blue skies research which are well worth doing which researchers have a hunch would be useful and which most people aren't going to have a clue about so in PPI clearly shouldn't be allowed to rule research entirely I think, you know, it’s you want very wide diversity of kinds of research and kinds of project to be pursued. But nevertheless I would have thought most in the context of the regularity of clinical research projects it would be helpful to have that kind of input. 

Adam researches a rare condition and gets to know the patients well. He gets a ‘gut feeling’ about who might want to be involved, but recognises he could reach a wider group.

Yes, so probably not in a very systematic way but in the process of performing the, recruiting people to the study getting to know them assessing them it’s become clear that some people have a particularly strong interest and I’ve really proceeded on that basis so if I’ve approached people who I’ve had a hunch would be keen to contribute and would have an interest in doing so. 

You know, inevitably when you’re studying a group of people there are some who are kind enough to give you a bit of their time but who you get the sense don’t want to be involved more than they need to be for whatever set of reasons, whereas there are others who seem particularly delighted to participate in research and therefore are likely to have the motivation time and energy to give more, to give to the planning process as well. So I think I’ve proceeded on the basis entirely of gut feeling about which people might want to be involved…

And how would you go about trying to make your involvement group representative?

I think as I implied earlier on I probably haven’t done yet. and one initial gesture you can make which I have made is simply to invite people to get in touch if they would like to contribute and that invitation’s gone to everyone that’s taken part in our research so but of course the people who get in touch are going to be a self-selected bunch of particularly keen to do so. So I guess that you would want to find ways of encouraging people who wouldn’t naturally come forward to contribute and I guess that might best be done by using questionnaires or having conversations with people in a systematic way as you, as you recruit them as you work with them rather than waiting for the few who are particularly interested to make contact.

Close patient involvement has led Adam to see a new direction for his research, around the psychological impact of the condition he studies.

So I’ve primarily up until now been thinking of the condition I study as one that effects memory and I’ve been interested in bits of the brain that have to do with memory and how to understand the processes that subserve memory and so forth and I’ve been thinking about them in terms of epileptic discharges in the brain and areas of brain damage and now I’ve encountered people who have accepted that all that is quite interesting and important but are really bothered by the effect that their epilepsy is having on their sense of themselves on their relationships with their family particularly to some extent with their friends. So that has pointed me in a, a much more psychological direction if you like than, than I’d been pointed in up to then, a direction that has to do with, with the social psychological impact to the condition. So that’s, that’s kind of a change of direction, it’s not an area I am terribly knowledgeable about or feel so comfortable even as I do with the, the neurology of the disorder and I think it’s fascinating and I can, I quite understand why the people I’ve talked to would like to understand that aspect of the problem better and see whether there is something that can be done about that, if there are ways in which they can enhance their memory which may make it easier for them to talk to reminisce with the people they’re close to. Of course it’s unpredictable it’s hard for me to say how I’d feel about the, other change of direction which yet again I can’t anticipate. But I think in general it’s, it’s interesting when a new window opens in a room which we’re used to living in.

Adam suggests involvement may be less relevant for some blue skies and bench research than his clinical research.

I guess it’s easier for somebody like me as research is very clinical because I’m used to trying to please customers really, I’m used to sitting in clinic with people and so PPI is in research a very small step from what I do clinically anyway. I guess that if you’re a bench researcher and your work is potentially very important and very valuable but much further from every day experience, every day clinical contact then, then PPI might, the relevance of PPI might appear less clear and the threat from PPI might be more alarming and because you might be afraid then you’re going to, you aren’t going to be able to pursue your, your particular precious ideas and you might, you may worry that it may be deflected in some other direction which you don’t fancy. Clearly there are, there are kinds of blue skies research which are well worth doing which researchers have a hunch would be useful and which most people aren't going to have a clue about so in PPI clearly shouldn't be allowed to rule research entirely I think, you know, it’s you want very wide diversity of kinds of research and kinds of project to be pursued. But nevertheless I would have thought most in the context of the regularity of clinical research projects it would be helpful to have that kind of input.