Tom

Tom is a clinician who does some research in which he’s been involving patients for about 10 years.

Tom began conducting research in bipolar disorder about ten years ago. He first involved people who had bipolar disorder in a funding application for a project after being advised to do so because it was a mandatory part of the process. Even though it was quite late on in the process, Tom didn’t want the involvement to be tokenistic, so he conducted a workshop with members of an already existing group of patients with bipolar disorder. They discussed the design of the research, the information leaflets, the consent form and issues around the interviews they proposed doing. Tom said he felt quite anxious about running it because he’d never done anything like it before, but said, They were very enthusiastic and very insightful and it was a useful experience.’

Afterwards, Tom realised he should have involved people at an earlier stage in the process. He decided he wanted a patient representative to sit on the project steering group, but despite approaching several he was unable to find anyone who would agree to do it. This was complicated by the fact that the patient group disbanded because there was no funding to support it.

Since then, Tom has been working with the James Lind Alliance on a Priority Setting Partnership to find out what questions should be answered by research into bipolar disorder. Patients, carers and clinicians have been involved in the process, which resulted in a survey that has been completed by over 2500 patients, carers and clinicians to find out what their priorities are. The National Institute for Health Research is committed to funding research based on patient priorities, so Tom is confident that it is a worthwhile exercise.

There is no question for Tom that involvement improves research and he said he wanted patients to keep trying to get involved by speaking to their clinicians about it. He said he would encourage other researchers to involve patients because they will make a valuable contribution’ and because involvement isn’t as difficult as it may seem.

Paying people for their input like everyone else on the team seems obvious to Tom, but he thinks people get involved mainly to help other people.

Age at interview 54

Gender Male

Personally I think people should be paid for their time as well as their expenses, but I don’t really understand all the reasons why people shouldn’t be paid for their time. I think there are dangers in paying people for their time because I guess you might get people who use that to you know, perhaps get more money for their activities than they should. Perhaps that’s the concern about it. But really I think the dangers of that are extremely small. And we ought to recognise the contribution that people make to these efforts not only in, you know, thanking them for it but in the way that the rest of us are recognised for what we do, which is in terms of money for our time.

Okay. And what do you think patients or members of the public get out of doing this, how do they benefit from it?

Well the individuals I think rightly think they’re making a real contribution to perhaps their own condition, their own health. But generally they don’t seem to be getting that. What they say when you ask them to get involved in research is they’ll do anything they can do to help if they think it might help other people. This is altruism. That’s what they get out of it largely. Yes that’s the main thing. I suppose they will also get some you know a feeling that they’re spending their time usefully and so on. They may get a little bit of expenses but mostly what they get out of it is the feeling that they’re helping other people.

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Tom sees a future where research is fully led by patients – and they have to remember to involve clinicians.

Age at interview 54

Gender Male

I think there’ll be more research studies which are patient and carer initiated with the subsequent involvement of clinicians in you know, designing the study and so on. And we might even get to the stage that we were in clinical research and mental health some years ago, where the involvement of clinicians becomes sort of a bit of an afterthought and we’ll have to start requiring patient and carers who are involved in research to do more than just involve clinicians in their research in a tokenistic way.

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Tom’s message to colleagues is that if you want to get funding for research involvement is mandatory but it can also make a really valuable contribution.

Age at interview 54

Gender Male

Well I suppose it’ll sound quite worthy I suppose, but what I’d say is if, if you want to get funding for your research it’s mandatory. The more that you can demonstrate the integral role involvement for patients and carers in your study the more likely you are to get funded. But that’s not only because you’ve done it, but it’s also because the patients and carers will make a really valuable contribution at all stages of the design and the conduct of your study. And it’s not as difficult as it seems and there’s a great deal of enthusiasm among patients and carers for getting involved in research.

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Tom argues that setting research questions which matter to patients helps avoid wasteful research.

Age at interview 54

Gender Male

The benefits of it is that the Trust is seen by patient and carers and the people that work in the Trust as being to a greater extent interested in hearing the views of patients and carers but also putting them at the centre of everything that we do clinical work, service organisation and research. One of the Trust’s statements is that it does that, we put patients and carers at the centre of everything that we do. So it’s able to evidence that a little more. And by doing that I think the additional benefits to the Trust is that the quality of research that’s carried out is, is greater because of the involvement of patient and carers and the direction that research takes is greater because of that. Or is better because of it.

And do you think research is made better by involvement?

Oh no question about it. There’s good evidence that a great deal of the money is wasted in research estimates made is that it might be as much as 85% of research money is wasted. I’m not sure I believe that. One of the reasons why research money might be wasted is choosing the wrong questions for research. Now if we have limited funds it’s very important that we choose the right questions and those questions must be those that are important to patients carers and family members and so on. So no point in choosing questions which are of no importance to them or there’s little point in choosing those questions or less point in choosing those questions. So yes of course it’s, it’s very important.

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Tom says researchers need to be able to be able to speak plainly, listen and be willing to give ground on things that are important to them.

Age at interview 54

Gender Male

Skills. I don’t know about skills so much. There’s something about, you certainly need an attitude of thinking that input from those quarters is, is important. I suppose one of the skills you need, coming to me thinking about your question, you need to be able to speak to members of the public in language they can understand. You need to be able to listen to what they say and I suppose draw well you need to be able to listen to what they say and give it proper consideration and recognise its importance. You need to be able to I don’t know. You need to avoid behaving like a bossy clinician when you’re discussing things with them and the way things should be run. You need to be able to give ground when necessary on things that are important to you and I’ve certainly had experience of that in this PSP. And you need to I suppose have the skill of, or insight to recognise you haven’t got all the answers. But neither have they. And you need to recognise that just because patients and carers are suggesting something it’s not necessarily the right thing to do.

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