Bernadette

Age at interview: 39

Brief Outline: Bernadette has been involving patients and members of the public in research for about 6 months, although as a doctor, she feels she’s always been involving them to some extent. Bernadette is now leading a James Lind Alliance priority setting partnership in rare inherited anaemias.

Background: Bernadette is a clinical and academic haemotologist. Ethnic background: White Other.

More about me...

Bernadette trained as a doctor and specialised in haemotology. She was very interested in research, so did her PhD before becoming a clinical lecturer. Her job is half clinical practice and half research. She does research on rare forms of anaemia and has been developing a test, which will be the first in the UK to diagnose these rare disorders in a single test. She also does a lot of lab work that aims to find the genes that cause the disorders. 

Having worked as a doctor Bernadette feels she’s always involved patients in her work, including their clinical care. In the last six months she has begun to think about involving them in her research, particularly because this is a requirement of some funding bodies. She has found this difficult because the conditions she researches are so rare that no illness-specific patient groups have already been set up. So she decided to set up her own and has people coming from different places in the UK to join it. Bernadette is now leading a James Lind Alliance priority setting partnership in rare inherited anaemias.

Because illness experiences are so frustrating for patients, Bernadette thinks involvement is probably a good thing for them: ‘You’re so powerless in front of disease, so I think that’s really helpful and useful to them.’ She questioned how useful it would be to researchers, but said she could be convinced by good evidence demonstrating the difference it makes. 

As the disorders she researches are so rare, it is difficult for Bernadette to get funding for her research. She didn’t think involving patients would help with this, but she felt they could come up with other ideas for research. She believed involvement was worthwhile and is ‘genuinely willing to give it a go’. She would encourage other researchers to try and take it seriously. Even though it appears to be an extra thing they have to do, she said ‘there is a lot of mileage in it and we should, as many of us as possible, engage with it and see where it goes.’

Bernadette only started involving people because she had to. She’s unsure how useful it will be for lab research, but will give it a go. Sometimes change only happens if people are pushed into it.

So definitely, you know, to be honest what got me started is that you have to put it on the application form for funding. So, you know, and like a lot of things, it’s a bit like trying to get more women in higher positions. One of the ways to do that is to have a law or a rule to say that actually, you know, you have to have some women interviewing on interview panels for example. So sometimes you have to do the right thing through a route of being made to do it. Okay, so I think that’s my reasons for doing it. 

I think it’s good for the patients because it’s so frustrating for them. And again I'm thinking mostly about parents of children with these conditions. So you’re confronted with being told you don’t know what’s wrong, you know; “your child has a lifelong condition, but we don’t actually know what it is and there’s lots of complications”. So some of these, so for example, some of these will be associated with [disease name] and some are not. And always thinking that your child may get [disease name] and you don’t know, and it’s just horrible, and I think I want the patients to be, to feel they’re doing as much, the parents to feel that they’ve got an option; there’s something that they can do. I mean, you’re so powerless in front of disease, right? So I think that’s really helpful and really useful to them. 

I still have reservations about how useful it genuinely would be to me or to other researchers to involve patients. And again one of the things, you know, because I've got a basic science project, you know, why would patients’ views of what I study in the lab be useful? …We’ve got a limited amount of money and we need to make sure that’s put to the best use, etc. But we already have a very strict peer review system and therefore any proposal, I'm never going to get any money just because, you know, I sound nice or I'm convincing. No. The only way I’m going to get funding is if my research proposal makes sense to other researchers, to other successful researchers, people who are in, you know, positions of power because they’ve done very successful research. So I feel that that governance, if you want to call it that, is already there and adding a layer of seeing actually patients have to look at that and have an opinion about whether my research makes sense or that’s how we should be spending the money, I don’t think that's right. So yes that’s my difficulty with it.

Can you think of any ways in which you might be convinced otherwise?

Well, you know, if – I need to see the evidence for it, right? I’ll become convinced of it if I can see a project that went through the normal peer review process and had a layer of patient involvement and that made the project better.

I'm genuinely willing to give it a go. I wouldn't, if I felt that this was just a chore and it was not achieving anything I wouldn’t carry on doing it. I’m quite excited about it, and I’ll see what happens next week, you know, in ten days at our meeting, and we’ll see. I think we’ll see, but of course it’s going to be a drain on time.

Pharmaceutical companies drive a lot of research investment in new drugs. Involving people helps balance this with patient priorities for research.

You want to make sure that you’re putting the limited amount of money to the best use possible. And I think one of things that for me was most convincing about why we should involve patients in research – and I can’t remember who told me was one of these, you know, I had two or three talks maybe three of four – was the fact that, so if we let the drug companies drive a lot of the research then they will obviously be looking things that are most profitable and therefore they're always looking for drug treatments. And actually it’s easy to think that what we need is more drugs, and in some disorders you might not need more drugs. You might need better physiotherapy or better emotional support or whatever. And those things are also all important. And I think if you’re listening to a patient group – but again this is really for a big, you know, people with leukaemia people with diabetes or Alzheimer’s, you know – I think that’s really important to involve them and say, “Well, actually these are the areas that people want to focus on.” And I think it makes sense for the funders to say, “Well does this project fit with what these thousands of people want?” For rare diseases I think it’s a very different question.

Bernadette is unconvinced that involvement makes a difference and wants more data – which she is happy to help generate.

The only way I’m going to get funding is if my research proposal makes sense to other researchers, to other successful researchers, people who are in, you know, positions of power because they’ve done very successful research. So I feel that that governance if you want to call it that is already there and adding a layer of seeing actually patients have to look at that and have an opinion about whether my research makes sense or that’s how we should be spending the money, I don’t think that's right. So yes that’s my difficulty with it… I need to see the evidence for it. I’ll become convinced of it if I can see a project that went through the normal peer review process and had a layer of patient involvement and that made the project better.

I think we need to have more information about how useful or otherwise it is before we think about doing it and again, I think this is still a relatively new area and it’s quite popular at the moment. And I think a lot of stuff that’s happening now will turn into data that we can then look back on, but now it’s not very clear. 

In a way right now I’m happy to get involved, I really want to see a lot more data about it. But the only way to get more data is to generate it and I’m happy to be part of that process but I think it’s too early to feel adamant about it one way or another.

Bernadette thinks her senior colleagues see involvement as a ‘drain on time’ and a box-ticking exercise, so she keeps quiet about some of her involvement activities.

Quite honestly, the very senior people think this is a waste of time and a box-ticking exercise. And a lot of what I've been doing I’ve been keeping it quiet, because I don’t want anyone to tell me that I'm wasting my time. And I can justify it from a point of view, “Well we need to tick that box” and, you know. And I’ve been, I think it was at [a] conference I was at somebody from NIHR was speaking. And he said, “You all don’t seem to realise that that box is really important and we will reject proposals that we’re, there’s nothing there, there’s nothing adequate.” So until now for example we’ve put in some proposals and all I can say is very honestly is that there is no patient group and I've involved individual patients, but, you know, that just sounds like you’re trying to fill that box, but it’s just the truth. No, I think people think it’s a waste of time in general. But again it’s because it’s a new thing, you know. And there’s so many, again, there’s so many of these things and, what else? Like public engagement. And you know, it’s all a bunch of things we have to tick because that the way things need to be done now.

And is it something that kind of competes for your time?

Yes of course yes, of course.

Yes, how do you feel about that?

Well, I genuinely think it’s worthwhile otherwise I wouldn’t do it. I'm genuinely willing to give it a go. I wouldn't, if I felt that this was just a chore and it was not achieving anything I wouldn’t carry on doing it. I’m quite excited about it, and I’ll see what happens next week, you know, in ten days at our meeting, and we’ll see. I think we’ll see, but of course it’s going to be a drain on time.

Bernadette feels it’s important for researchers to take involvement seriously and make it work, so it doesn’t turn into a ‘bureaucratic nightmare’ like ethics.

I would say to try and take it seriously. And that I know it’s an extra drain and it’s an extra thing, but I think there is a lot of mileage in it and we should, as many of us as possible, should engage with it and see where it goes. And I guess the worry, it’s a bit like the ethics - the pendulum’s swung so far to the other side and now we’re in this bureaucratic nightmare. I guess the same thing could happen with this and in a way if we don’t, if we’re not involved with it from now, what’s going to happen is the pendulum is going to swing and it’s going to be out of our control, so we should really try and engage with it and keep it in control and make it work, you know, make it work for everybody.