Fiona

Brief Outline: Fiona is an orthoptist and a senior lecturer and research fellow. Her job combines clinical practice, research and teaching. She has been involving patients and members of the public in her research on formal and informal bases since 1993.

Background: Fiona is married with two children, aged 9 and 11 years. Ethnic background: White Irish.

More about me...

Fiona is an orthoptist and conducts clinical trials in vision research and neurological conditions, including stroke. In her clinical practice, she always felt it was important to listen carefully to patients. So when she became involved in academic research she joined forums and committees that involved patients and began to formally involve them in her own research. She said it’s important to listen to patients because they are the ones who have the condition and ‘are able to tell us what’s important to them. I’m only guessing – I’ve not had a stroke.’

Initially, Fiona noticed it was difficult for researchers to know how to involve patients. When she discussed her research with them she found they provided some very valuable insights and input. They have since become long-term friends of hers and she has continued to discuss her research with them. However, she felt it wasn’t fair to continue taking up too much of their time. Consequently, she was involved in setting up a ‘user reference panel’ of stroke survivors and carers, which frequently tries to recruit new members. The panel is chaired by a stroke survivor, but Fiona organises it and does the administrative work for it.

The user reference panel comments on the documents associated with research, including participant information sheets and protocols. Fiona described the panel as a good sounding board for discussing both current and new research ideas and said it was vital to ensuring her research is designed and conducted ethically. As a result of the panel’s feedback, patient information sheets have been redesigned to try to make them as user friendly as possible. Providing feedback to the panel is important, so at the end of each trial, and in addition to academic publications, Fiona and her team write a lay-friendly summary of the research findings, which she sends to everyone involved in the research. 

In general Fiona thinks researchers are divided in their opinions about involvement; some see the value of it and others see it as a box-ticking exercise. As the major health funders involve patients in reviewing grant proposals, Fiona believes that tokenistic involvement will be uncovered and may result in proposed research not being funded. She felt her colleagues were very positive about involving patients and said this was especially true for junior researchers, but she felt that researchers needed proper support, particularly with the administrative side of involvement. 

Fiona would advise others to involve patients in their research because one of the major benefits of involvement is that researchers will never have to think about what they will work on in the future; the patients she is in contact with always supply good ideas that are important to them. Ultimately, her aim is to improve the treatment and care of patients, and involving people in research is important in achieving this.

Fiona tries to use clinics to get views from people who wouldn’t otherwise come forward – but time is very limited.

Their voice is still very important, but they're not willing to come forward. So, you know, when you talk about representative, yes you can try and tick the boxes for getting a wide age range, male and female, they've got the visual conditions, all of that sort of thing, but you still have got the problem that you've got the, I suppose the extroverts, the ones willing to come forward versus the ones who either are not willing or would never have thought about giving their opinion, so you don't access those.

Doesn't stop me talking to them though in clinic when they do come through.

Yeh.

But that's the only way I can capture their views.

…We're doing our best I hope but there's a lot we don't know.

And a lot we don't know in terms of patient experience or PPI or?

Yeah. Yeah you've got individuals coming into clinics, they've got a time slot – hello, goodbye, you know. You're trying to do the best within that time slot and with the management options that are available to you, but they have to leave and they've got to go home and they've actually got to carry on living with that. And we don't know exactly how they're living with it. Lots of people don't ask and I think sometimes we don't ask because we're afraid of the answer and knowing full well that if you do ask that you could be there for another hour longer and you don't have that time within clinics. And I know that's going back to a clinical front as opposed to a research side of things, but actually I think research and clinic should be combined.

Fiona describes working out costs of involvement to put in grant applications and recommends the INVOLVE website for help.

We have to hold things on conference calls and if you know that you're going to a meeting that they're likely to be at then you've got, you can factor in some face-to-face meetings there but with the grant applications now I would always cost in for at least one face-to-face meeting a year. And on top of that you've got to look at where people are coming from because if they've got disabilities you need to factor in that they might need to travel up a day in advance so there's hotel accommodation to add in on top of that. It's good to talk to the individuals to find out if they would like payment – either payment for the full day or half a day or an hourly rate or whatever. Not everybody wants that but certainly the, I suppose – I can't even say it's the younger ones that do want payment because it, actually that doesn't follow; there are older ones that would like to have a payment for their time as well – and we just follow the National Guidelines. There's a very nice paper on INVOLVE's website about, you know, what sort of payments you should consider. And then once we've actually worked it out – we have a very good research business and support office here at the university that help with costings – but once we've actually worked them up they, we ask for those to be checked by our user group first of all before they're actually submitted with the grant just to make sure that we haven't – well we never overdo it – but to make sure that we haven't underdone it. 

Fiona thinks researchers are embracing involvement and it’s just part of what she does. But we’ll know it’s embedded when we stop talking about it, and research ideas come from patients.

I would like to think it's because researchers really do see the value of it. I suspect for some it's because they just have to do it. You know, you can't do a grant application these days without having thought about PPI, and it's not throw away remarks on the form because, certainly for example NIHR, they have lay members reviewing those application forms, they can spot a fake ten miles off, so, you know, you can't just fob off a section on there and copy and paste and that sort of thing. So on the basis that that's enforced and rightly enforced within those applications, people are having to think about it. But I would really like to think that they are embracing it, not just doing it for the sake of it. But I'm lucky. The people I work with really seem to be on-board. Either they're really good at lying - but you know, they really genuinely seem to have taken in on-board. You know I can take you down the corridor here, introduce you to people, and they're all a similar mind-set.

…I mean I just, it's so part of what I do now. With hindsight I would love to have had a far more formal involvement of PPI early on, but that hindsight's wonderful, and it just didn't formally exist back then, I mean we're talking twenty years ago. I would love to have far more involved but it's difficult to get people involved because it means them giving up their time and they've got other things going on in their lives as well and it's appreciating that. And I suppose I'd like to make sure that those that are involved know just how much they are appreciated but it's how you do that in a nice way. But I don't regret anything I've done, I just wish I'd done it earlier.

What's the future of PPI? 

Well, we need to be moving on from conversations like this - It should just be a given, and at the time that we stop talking about ‘it needs to be embedded’ and all this sort of thing, then I think we'll be there. In fact what we really need to see I think as well is that the research coming from PPI is what we do; that the ideas aren't coming from us and we're asking whether this is OK – there needs to be a switch round. The two have to come together and I don't actually think one is more important than the other. Researchers have some very, very good ideas and that needs to happen, because there's some very, very clever people who come up with a complete spin on thing, and that really is important to go forward. But, at the same time, the patients themselves need to be saying, you know, this is important and the research needs to equally come from that side. It needs to be a partnership.

Fiona finds involvement ‘a very rich part of my life’ and never stressful.

With work being stressful and so on – is PPI ever stressful? Or what are the sort of emotions associated with it?

No. No, I suppose I would get stressed about PPI if somebody was in my face with totally the opposite attitude to me. And I would just tell them to go and get lost because I don't have time for those sort of conversations anymore. But no, I've never been stressed about PPI and I really look forward to the meetings that I have, because do you know what? We always have a laugh, and I don't have a laugh with work colleagues as much as I do with those individuals, so that's actually a very rich part of my life.

Fiona encourages researchers to overcome their fears about involvement. There’s plenty of support out there and there’s nothing to lose by trying it.

Well you see I suppose I didn't really have so many issues because I go back to this whole thing about being a clinician at heart and you have to talk to your patients. But I suppose if you come from a background where you didn't have that level of communication, if you were purely academic – I'm not quite sure what that term means sometimes, but do you know what I mean? Then I suppose it might be difficult to think about how you would communicate with the public. It's a hard concept for me to work through that one but, you know, it may just be down to their own insecurities and fear always comes from insecurities. But then again the only way you're ever going to overcome that is to tackle it head on and it goes back to that message of, 'What have you got to lose?' There are so many ways now that you can, and so many support agencies you can go to access PPI and they'll actually hold your hand doing it. So it's not something that you have to sort of boldly go forth and pave your own way. You can do it that way if you want but you can do it with support as well so yeah I can see where some fear can come from but that shouldn't stop you, that isn't sufficient reason for you to not go and try it out.

Hm mm OK.

That you might just get a little bit of gold at the end of the rainbow for doing it.