Marian

Age at interview: 46

Brief Outline: Marian is a research professor in public health. She conducts research into pregnancy complications. She has been involving patients and members of the public in her research for 10 years.

Background: Marian is married with three children. Ethnic background: White British.

More about me...

Marian conducts research about pregnancy complications. She described this as a controversial subject when it comes to involvement and difficult because she involves parents who either have had very sick babies or who have lost their babies. As well as involving parents, she has involved representatives from voluntary organisations working with women who've had pregnancy complications. But she said the meetings have been most useful when the women themselves were in the room. 

For Marian, involvement has two main purposes – to ensure research is relevant to people, and is designed in a way that will encourage people to participate. She also believes it plays an important role in getting evidence into practice by patients and members of the public sharing it with their networks and patient groups, perhaps using social media. 

Ultimately, she is responsible for ensuring her research is conducted properly, so she weighs up the pros and cons of suggestions made by her involvement groups before deciding what's best. Sometimes this involves changing the research slightly, whilst ensuring its quality isn't affected. She felt it was equally important to explain her decisions to her involvement groups and said that communication was an important skill for researchers to have. Being good at chairing involvement meetings is also important, but Marian said she'd prefer a member of the public to do this, although, in her experience, when this happens, she often ends up chairing from the side. 

Marian believes people who are involved should have their costs reimbursed. She was concerned that payment might lead to people who were involved becoming professionalised, but recognised that people may have to take time off work to get involved in research and that this was a problem that needed to be addressed. She suggested that raising awareness of involvement with employers might convince them to allow people to take unpaid leave. This might also create more diversity in who gets involved. 

The research Marian does can be stressful because she works with people who've had very traumatic experiences. She has children, but worries about her junior researchers who haven't yet. She has organised sessions for them run by organisations specialising in bereavement to help them think about their emotions and how best to cope. The people she's involved have said they benefit from the support they get from being with a group of people who've had similar experiences, and this made her wonder about the emotional implications of involving only one or two people.   

The benefits of involvement outweigh its challenges, so Marian intends to continue involving people in her work. She encouraged people to get involved in research saying, 'Don't underestimate what you know and what we don't know... We're not the experts in what really matters and that's what we need to know from people'. She described involvement as ‘incredibly energising' and said has got a lot of ideas for research by involving women who speak from their own person experience.

Involving people helps you identify research questions that matter to people and an acceptable research design.

So for me, the purpose of PPI is twofold. So, as I've said several times, you know, we might have an idea but actually it might not be what's really important to people, in my case women, with personal experience of whatever this condition is. The second purpose is that, you know, we might come up with what we think is a fantastic design for a study but, you know, if we produce, I don’t know, a questionnaire that’s five hundred and fifty pages long, we need PPI members to say, "Come on don’t be silly, no woman is going to fill this in." Or indeed, as I mentioned, you know, we deal with very sensitive areas. We can draft what we think might be a sensitive way of asking women to take part in research, but actually to somebody who's had that experience it might be completely crass and, therefore the study will fail. So without that input you're not going to get the research; you're not going to change patient care and therefore you're not going to get patient benefit. 

Marian used to get a ‘real buzz’ she got from clinical contact with patients. Involving people in her research gives her some of the same ‘positive reinforcement’.

For me there are more benefits than challenges and I can see, you know, not just in my area, but because I work with grant panels I can see that the benefits that a lot of, you know, that a whole wide range of areas get from it. It's a difficult tightrope to walk because, you know, politically you can't say, "I think this is rubbish," or, "I don’t believe that."  But I mean from my point of view, we do get so much benefit from it. I get so much benefit from it just as I said, you know, for me it's that , you know, we, as a clinician you get a real buzz from having cured somebody you’ve, I don’t know, you’ve delivered a healthy baby where it might have died. You get that kind of buzz every day. As a researcher, our positive reinforcement occurs over a much, much, much longer scale and so I get, I get my tiny bit of that positive reinforcement from my PPI groups. And so, from that point of view, I don’t want to stop doing it because that’s the bit I get, you know, that can sustain me through the year. In fact now I've got two of them it only has to sustain me for six months so that’s good.

Sometimes Marian needs to involve people with a very specific experience – but other times ‘you just want somebody who is sensible and has an opinion’.

Yeah but you see that’s the thing about pregnancy and childbirth – we've all been through pregnancy and we've all been through childbirth because we were all born. So it's something that everybody will have some contact with. So, you know, some of the, one of the programmes I work on deals with pregnancy complications but we do have public members involved who have had kids, but not any complications. So yes, we clearly involve people who are across the whole spectrum of experiences. Now in many ways that’s almost convenience because it's whose, it's who says yes. Now with some areas we do have to be very specific because we want people who have had specific experiences. With other areas where we're covering a huge range of potential pregnancy complications, you just want somebody who is sensible and has an opinion about, you know, what if this were to land on your doorstep.  Now how you gauge that – there must, I guess when they recruit public members for grant panels and things, there must be some sort of interview process, but I don’t know how you judge that. How do you judge any of us at interview as to whether we're sensible and don’t know.

Meeting with parents of babies having surgery has generated new research ideas, and reassured Marian that parents in research won’t mind being followed up earlier than she had thought.

I've just set up another group as a; one of the programmes I deal with is babies who have had complications needing very early surgery. We've just had our first meeting a couple of months ago now and, again that was like the first meeting of the maternal programme, incredibly energising – and I think I've probably still got it on my desk – I came away with I think about five big flipchart sheets essentially full of ideas but there were lots of things that I would never had thought about. So I don’t know if you want me to go into specifics or not but we're talking about babies who've got abdominal problems. So basically when they come home from hospital they’ve either got a great big scar, a wound in their abdomen, or essentially it was still healing. 

How do you put a baby like that in a car seat where the clip is right in the middle of their tummy? So there are lots of things like that that come up that we would never think of doing research into. Other things that arose – Disability Living Allowance – I hadn’t thought about Disability Living Allowances but, you know, classification of disabilities was one of the big issues they raised because it affects what allowance the mums can claim. And the vast majority of the mums, in fact I think all of them, hadn’t been able to go back to work. All of these things that, you know, are as researcher, may not have thought about. I guess I would probably have thought about the going back to work but I would never have thought about car seats and I would never have thought about Disability Living Allowance. 

And I guess the other, the change that we made on the basis of that was moving things forward. So that particular group we had been looking at following up the babies when they were much older but actually the group were really keen that we started the follow-up from when the babies were small. They were, we'd been a bit concerned that actually maybe the challenges, as a parent of a new baby with problems, had been too much to want to cope with being involved in research at that stage. But they were very clear that they would all be extremely happy. It's not going to be the same for everybody but we can still ask, you know we had not been going to ask – we can clearly ask. 

The combination of NIHR pressure and younger researchers coming through is changing attitudes, but involvement should feature in formal assessments of research excellence.

What do I see for the future of PPI? I mean I think that the NIHR are such a strong driver in the research environment, the medical research environment in the UK that, whatever the NIHR is pushing will happen. I think lots of group/applications are still paying lip service to PPI at the moment. I think that will carry on changing and I am, I mean, as with many areas I'm very hopeful about the junior level of researchers, the junior level of clinical staff who will come through a bit like me where this is normality. So I think it will continue to become more and more normality and unless the NIHR changes dramatically or it doesn’t get sufficient funding in the next spending review then I think that will carry on changing. It'll take a while for the dinosaurs to get out the top end. And a very interesting point about whether something in the REF [Research Excellence Framework] you know, can be, you know – obviously there's more of a, more of a steer in the REF in terms of towards impact. So whether you can link the added value of PPI to an impact I'm not sure. 

Marian feels involvement must be costed properly in all grants – though recently she had trouble persuading panel members to claim even travel expenses.

So clearly it's being under-costed, under the amount of funding required is under-recognised. Although I had the exact opposite challenge in the parental advisory group meeting that we had a couple of months ago. I could not get them to give me travel, they would not let me pay for their travel off the grant because, as far as they were concerned we were providing a venue and lunch and it was a way that they, who had by and large been talking to each other over the internet or via the Facebook group or through the support group, could meet together. And so what we were providing them with the day to meet together and, as far as they were concerned they should be paying for their travel. They brought the children with them because – I hadn’t told you about that – so they brought the children with them and that was brilliant. So I have to give credit to my clinical research fellow who, you know, we talked about it but we thought, well if the children come too we're much more likely to get the mums and dads. And it was great, it was really great. You know it actually allowed almost more freedom because it didn’t matter what racket was going on. So that was really good and so credit to [name] for suggesting that.

But so they weren't paying for childcare, they didn’t want to claim for their travel and when you mentioned that, you know, you’ve got INVOLVE guidance that you're allowed three hundred pounds a day it was like alien, alien concept. You know which is lovely but actually that made me feel a bit bad because. Anyway I think we have persuaded quite a number of them to at least claim for their travel. But interesting that what INVOLVE says and what people feel is perhaps at odds.

Involvement may be limited by who can get time off work. Marian wonders if paying people to cover unpaid leave would be better than having to take annual leave.

And one of the other difficulties of PPI in general, you know, it's voluntary. You mentioned the issue of payment that we do have to think about. But payment is all very well, but if you're in a job it's not just payment, it's you have to take leave from your job and so actually I guess the type of people who can volunteer to help with PPI for projects for grant panels is limited by who is going to be able to get time off work. And I think that’s something that we're going to have to solve with employers if we're going to get PPI, the best PPI we can. And maybe if one can be recognised to take unpaid leave with the balance of the payment to PPI members then maybe that’s one way round I guess. 

…I think people should have their costs reimbursed, and their costs reimbursed if that’s a lost day of work. It's difficult because you don’t want professional public members if you see what I mean? I don’t think it should be a job because then it loses its purpose. So, but costs in the widest sense, so you, as a PPI member, should not be out of pocket for going to that meeting whether it's your travel, your childcare, your work costs. And if it were recognised by the employers that it could be a day of unpaid leave rather than taking it as annual leave might broaden the representation we can get. Obviously you have to add in training days and things. So it's not an easy area to extend access.

In Marian’s experience it is usually easier to get ‘a balanced view’ when you have lots of individuals in the room rather than people representing a support group.

And I come back every year really energised by the meeting but very interestingly, over the four years, the number of, again it's a challenge thinking about the nature – so the number of women who've had the experience who've been attending, has fallen off; whereas the members who continued to attend are the representatives of the voluntary organisations, who've not necessarily had these experiences themselves, but have worked obviously closely with women who have had experiences like that. 

And perhaps that changing balance has led to some of the difficulties. So at the last meeting I had we were discussing one of the research projects and the outputs of one of the research projects and the interpretation of that research project. And I vividly remember we were around an oval table; there was the members on one side of the table and the members on the other side of the table who had opposing political views, you can imagine - caesarean section delivery choice and normal birth – very contentious areas. So one particular group were very keen on caesarean by choice; the other group were very keen on encouraging all women to have normal birth and access to normal birth. 

And so very interesting sort of chairing that I had to do between these opposing views as to how we should interpret the research results. So yeah interestingly difficult to balance those views. And I think actually that – and its one thing that, in terms of PPI that I can't quite decide what's best. There probably isn’t an answer, but it's, when we had a lot of women who'd had the experience themselves, in the room, it was easier almost to get a balanced view than when it's organisational representatives. And I guess that’s a difficulty I have – I sit on a number of grant panels and one of our public members, because I'm on an NIHR panel, that’s what we now call them, is very – she is, her opinion is very firmly that organisational PPI members do not represent the PPI view and that there should always be, for want of a better word, a true public member. And I can see where she's coming from I think. 

On the other hand, as I mentioned some of the work we do with parents who have been bereaved, and we work incredibly closely with SANDS - which is the Stillbirth And Neonatal Death charity – and actually they, as an organisation, I feel do represent the views and they’ve got a vast experience of talking with parents who've been bereaved. I mean in fact one of the SANDS members we work with most closely is herself a bereaved parent, so in many ways she brings both things. Now that type of person is really rare and so I think that’s – and one of the other difficulties of PPI in general, you know, it's voluntary. You mentioned the issue of payment that we do have to think about. But payment is all very well, but if you're in a job it's not just payment, it's you have to take leave from your job and so actually I guess the type of people who can volunteer to help with PPI for projects for grant panels is limited by who is going to be able to get time off work. And I think that’s something that we're going to have to solve with employers if we're going to get PPI, the best PPI we can. And maybe if one can be recognised to take unpaid leave with the balance of the payment to PPI members then maybe that’s one way round I guess. 

Marian is concerned that the lay perspective on grant funding bodies seems almost over-represented.

I mean in general, I have to say, I am very positive. I quite clearly get very different aspects from it but it's not without its challenges.

…I guess my, perhaps where I struggle with PPI the most is relating to grant applications and sitting on grant panels. So I do sit on several grant panels all of which have PPI members and I think that’s really important. But it is very interesting dynamically around the table. I don’t again, I don’t know whether it's right or not but, the public members, their voices are stronger than the professional members. So if a public member expresses an opinion, and you do have to remember it is always just their opinion. So although there will always be at least two, and probably three public members on the panel, it is only one individual's opinion whereas I guess – so it seems to have more sway. 

Now I guess there are professional people on grant panels who are not afraid to give their opinions and maybe it's just the Boards I've been on. You know maybe there are some that are swayed by different individuals and maybe I'm just being over-sensitive because it's PPI, I don’t know, I don’t know. But I haven’t resolved in my head what the best way to get the best contribution in terms of reviewing applications is.

Marian worries about some of her more junior researchers listening to difficult stories about pregnancy. They had some training about bereavement and emotions.

It is emotionally charged. I guess the whole area I work in is it can be very difficult because, you know pregnancy and childbirth, for most people – happiest days of their lives. They, you know it's a day they’ll always remember with joy and for the, I guess the small sub-set we work with, the pregnancies have been difficult; lots of uncertainties and that day the baby was born is not the same. Many of the couples where the mum's had a severe illness, that colours her whole, the whole of the rest of her life almost. We talked to, this is one of part of one of the Healthtalkonline modules actually – we talked to a mum who'd had twenty years after she'd had her son and she still felt that her relationship with him was coloured by the fact that she had such an abnormal birth experience. So you do have to be emotionally quite strong. 

And I guess for me, because I can see some of the changes, so we've got I know of practical examples where the research that I've done has made a difference which should, even if I can't actually demonstrate it, should improve, you know should prevent people getting ill, and then you have to bear that in mind. I worry about some of my junior researchers; so you know I've had my family. Other of my researchers haven’t. And I do worry about them being exposed to their contact with PPI. And so they're only, they're not medically qualified, their only contact with childbirth experiences are this very extreme negative side of it. So it is interesting. 

…So we've, so for the team on the half of the programme that I deal with where we deal with maternal deaths, we've had a whole session with a, in fact run by a group from the Foundation that deals with sudden infant deaths, essentially dealing with the some of the bereavement issues and sort of your own emotions and how you can get more support. But it is difficult, it is difficult particularly, as I say, for people who are not clinically trained so either nurses, midwives, doctors or other allied health professionals. It is hard and I guess I tend to, therefore, take more of the burden on myself because I guess I feel robust enough to be able to deal with those. So I hadn’t thought about PPI training in that respect for the researchers quite as formally as that, but that’s probably a good idea.

Marian’s message to other researchers is that involvement can give you positive feedback and raise your enthusiasm for the work you’re doing.

In terms of messages for researchers who do or don’t do PPI, I guess it's what I've said earlier you know. As a researcher we have a long timescale before we get the sort of buzz of, you know, the paper being published. Even longer timescale before we get the actual impact, and we'll probably never know the people on whom we've made an impact. At least by being involved with PPI groups throughout the course, we get a bit of that positive feedback as to what the benefit might be and for me that’s very, it raises my enthusiasm to battle the challenges of getting research funding. Of all those practicalities of ethics applications or whatever it is you need to do because you can see the endpoint that you might be, you might be leading to in terms of making a difference. For those who don’t do PPI it's more difficult. Yeah other than saying that it does make a difference to what you deliver at the end of it. Not sure what messages I've got.