Sharon
After her daughter was diagnosed with arthritis, Sharon became involved in setting up a support charity for children. She successfully applied to become a consumer representative on the Medicines for Children Research Network and has been providing a parent’s perspective on health and medical research for about five years.
Sharon is married and has three children, aged 13, 11 and 7. She currently works in education in a clinical research facility at a university, but previously was a research nurse. Ethnic background: White Irish.
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Sharon was involved in setting up a support charity for parents after her daughter was diagnosed with arthritis. She heard that the Medicines for Children Research Network were looking for consumer representatives and a couple of consultants she knew encouraged her to apply for the position. She and two other representatives were appointed after telephone interview. She felt that the application process was important to ensure that people who could draw on their own experience and provide their opinion on research were selected. Sharon wanted to get involved so that she could “try and take something positive out of a negative”, her daughter’s diagnosis. She felt it would be a worthwhile thing to do and has found that to be true. She has benefitted from doing PPI by meeting amazing and inspiring people, and feeling that she’s done something purposeful. She said the research she sees gives her hope for the future and has given her more confidence in herself. Time is the main cost of Sharon’s involvement, but she reviews the documents she’s sent in the evenings when her children are in bed, so she doesn’t feel it takes her time away from them. The Network also sends the documents well in advance so she doesn’t feel rushed or under pressure.
The Medicines for Children Research Network meets twice a year and Sharon takes time off work to attend. She thinks face-to-face meetings are important because they allow people to get to know each other. She also takes part in a teleconference each month, which she found a bit strange at first, but felt it was probably easier because she had already met the others in person. Between meetings, she receives research documents to read and comment on. When she reads these she thinks about how a parent sitting in a clinic with their child would feel if they received information about that research. She gives her feedback on a form, which is collated with the other consumer representatives’ feedback and sent to the research team. The researchers often respond to show them how their comments have been used. As well as these activities, Sharon has had an editorial about her PPI experiences accepted for publication and has been invited to be a lay judge for a science competition in which researchers are judged on their ability to present science to the public.
When it comes to children’s research, Sharon thinks it’s important that researchers have both the child’s and the parent’s agreement to take part otherwise the study may have problems with trying to keep participants involved. She believes that including parents’ opinions in children’s research will improve it and make it more relevant for patients. She and another consumer have contacted other parents whose children have rheumatological conditions to ask them what research they would like to see being done. They hope this will encourage researchers to research what’s important to parents. As Sharon used to work as a cancer research nurse, she knows what it’s like from the researcher’s point of view. But it has been about 10 years since she worked and she thinks a lot has changed in the way people think about research, so she feels she can separate her professional experience from her experience of being a parent.
Sharon feels payment is not why people get involved, but it demonstrates that their contribution and time are valued.
Sharon feels payment is not why people get involved, but it demonstrates that their contribution and time are valued.
And do you think that people should be paid for doing PPI?
I think it's really difficult. It's, but I think there seems to be something about being paid and putting value on their role by being paid. I don't really know what's the best way forward for that because it's nice to think that you do it because you really feel passionately about the role, but yet you're probably the only person on the committee who it’s not your job and you're there for – it's quite nice how the Medicines for Children Research Network do it by giving you an attendance fee when you go to a meeting, especially when you've taken annual leave to go to a meeting because I don't think anybody else would take annual leave to go there. So, so yes you could argue that yes they should, but it shouldn't be the incentive to do the role if that makes sense?
The role shouldn't be about the money should be about the person doing it. I think it will change. I think, generally, people will be paid more and more and there’ll be an expectation that people are paid and that's probably right. I was quite lucky, I could probably afford to do it – just, not easily – but I probably could afford to go and not need that income or not mind taking an annual leave day.
Sharon reviews proposals for research in children. She always tries to think herself into the shoes of a mum or dad asked if their child will take part.
Sharon reviews proposals for research in children. She always tries to think herself into the shoes of a mum or dad asked if their child will take part.
Sharon has been involved at many different levels. She and another consumer have done their own piece of research on parents’ research priorities for their children.
Sharon has been involved at many different levels. She and another consumer have done their own piece of research on parents’ research priorities for their children.
Opportunities for lay people to give each other support are really important, but it needs funding and organising. Social media may help.
Opportunities for lay people to give each other support are really important, but it needs funding and organising. Social media may help.
Again social media there's a couple of groups on LinkedIn where you can see what's happening in other patient and public involvement areas. But actually that's one thing where the Medicines for Children's Research Network has possibly not had enough funding or structure to organise. But, for example, I'm very connected with the rheumatology group but there's probably thirteen or fourteen other groups and it would be really interesting to know how their patient and public involvement role is developed and how they've got on and what they've done in their group. And actually I think we had one event in the five years where we all met up but it would be quite nice to even have an annual meeting or an annual training day or something else. But I suspect there just isn't funding for that, which is a shame because actually that would be really valuable in terms of where have we got to and where are we going and how do we get there. And again just that sharing experiences and sharing what's worked well, but I suspect there aren't funds for that which is why it hasn't happened.
Involvement can sometimes make Sharon feel ‘disheartened, dissatisfied and disappointed’, especially when researchers treat it as a tick-box exercise.
Involvement can sometimes make Sharon feel ‘disheartened, dissatisfied and disappointed’, especially when researchers treat it as a tick-box exercise.
And you know when things are frustrating and you're disappointed and so on – what are the kinds of things that spark that?
Oh probably where people don't, probably where committee members don't understand what PPI actually is and they see it as a tick box exercise or it's something they have to do rather than something they actually value.
That would probably be quite frustrating or I think I talked about before, when people say about ‘using’ patients for research. I just find that disappointing and it's good people just think about ‘involving’ patients or ‘engaging’ patients. But that word ‘using’, I just dislike it yeah.
It helps Sharon to have her travel and a hotel arranged. Social time together and face-to-face meetings make it easier to have teleconferences later on.
It helps Sharon to have her travel and a hotel arranged. Social time together and face-to-face meetings make it easier to have teleconferences later on.
And what's it like taking part in teleconferences?
Well now it's fine. At the first bit it's a bit strange but you actually get used to it and, as I said, because you've met the people it's much nicer and I'd always advocate that if you can have a face-to-face meeting first in any group and then you can dial in and then. I actually run a teleconference for a new parent group that's just formed as part of the British Society of Paediatric and Adolescent Rheumatology. So we actually have teleconferences probably once every six weeks and for those, most of us had met but a few people couldn't make the meeting, but again what I ask people to do there is just to say their name first so people know who's talking because if there's twelve to fifteen of you on a call it's really hard to know who's actually speaking at first. And sometimes you just have to interject and you might be, you've no signals or you've no signs of people are trying to also speak. So you therefore just need to just interrupt or just speak whenever you get a pause. Difficult, probably harder than a face-to-face but time, it's a better use of time and it doesn't cost anything as opposed to everybody travelling.
The main cost for Sharon is time. Seeing the research done gives her hope.
The main cost for Sharon is time. Seeing the research done gives her hope.
Well we've touched on financial costs. I guess there's always time costs of doing it. A lot of, and it's whether people work, whatever people can fit it in to their time. I work in the evenings so I come home and I'll put my children to bed and then I'll turn on the computer and Ill often work really late doing PPI things. So you'd have to be really interested and you'd have to care about what you do otherwise you probably wouldn't do it, but, so I don't see that. I see it as a time cost, but I see it as a good use of my time if it's a more positive way to put it. And then maybe, I'm trying to think if there are emotional costs, perhaps for some people there might be. I haven't felt any personally but there might be for some people.
I was going to ask you that about whether or not the sort of things you look at ever sparked off any sort of emotional reaction?
No because generally I think research is what gives me hope for the future so therefore I think it's really important that research happens. So I actually feel that that committee is something that actually makes me feel more positive about the condition than day-to-day going to hospital appointments and everything else where you aren't aware maybe of what work is going on in the background. So for me I've only seen it as a good thing to be part of.
Sharon has developed confidence and skills but she isn’t sure yet how this might feed into her working life. A career in involvement doesn’t seem possible.
Sharon has developed confidence and skills but she isn’t sure yet how this might feed into her working life. A career in involvement doesn’t seem possible.
I just went on a time management course last week and in the course the speaker, the lecturer was talking about the rocks in your jar and what are the important things. So really you would expect my important, one of my rocks to be my career. And I was thinking actually the confidence that I've gained from doing all this work should be translated into my career, but that hasn't happened yet. So I keep thinking that will be – and maybe you don't have the time if you're on the time management course to. The rocks that you put in are your children; your juggling; your whole life – it's whatever you choose to make your rocks. So no, I do think I'm actually missing a career rock in that jar but , so I'd have thought the confidence I gained would have helped me to have worked to find a way to a career. Because actually there is no career development in being a consumer rep or doing PPI work. There is if you're the employed person doing the, like for example, the MCRN administrators probably or the people who run the MCRN [Medicines for Children Research Network] probably with them this career. So for them developing PPI probably is a career profession for them. But actually the PPI members I don't think there's any career progression from that role.
People with long-term conditions have something different to contribute than those who have recovered.
People with long-term conditions have something different to contribute than those who have recovered.
Now that's a really good question. Yeah because actually that's the difference between a chronic illness which is a lifelong for most of these children. The ones that you remain involved with most of us our children will have this into adulthood. So that's completely different because the issues are always there and as the child grows up there are new issues. So our next thing will be transition to secondary school, and then to adult services, which will be a different stage altogether. So for somebody, for example, who had a condition or had an event and then they are no longer – they're discharged from the services. I think their experience is valuable, but I think it gets less valuable as time goes on sadly. But yet a lot of these people are really great, but I feel that the position should rotate. And I think even I should rotate, even I – that sounds very arrogant – but I think even I think I shouldn't stay on the committee, I think new people should keep moving it forward and what's really great is that we have recruited new so everybody on the committee is new just through circumstances – I'm actually the only original consumer left on it.
Mentoring new people would be a good way to remain involved, although Sharon thinks her experience will always be relevant as her daughter’s condition will never be cured.
Mentoring new people would be a good way to remain involved, although Sharon thinks her experience will always be relevant as her daughter’s condition will never be cured.
Because I was going to say that if you do have an end point to all this.
Yeah.
What do you do with the people who have had this experience and gained these skills and…?
I know. Well that would be a nice way to maintain the contact, wouldn't it, and to almost be that support person for them in the role because I think there has to be an end point. I think it is different with chronic illness because you're still sadly using the service; you're still treating your child. Nothing's changed other than slight advances in medicine so nothing's changed in terms of your patient experience. You're still at your clinic every three months, so you're still very much connected with the service and it's still very personal to your family and to your connections. But, yeah I think that would be a really nice way of actually continuing to be involved and your experience and your confidence in your relationships that you've built up still being, still being valued and I guess still being – I don't want to say used because I really, really dislike that word, when you use people –but it's still being utilised I guess.
Sharon describes fun ways Cancer Research UK brings people together with researchers.
Sharon describes fun ways Cancer Research UK brings people together with researchers.
Involvement improves recruitment because it leads to better research, but there is still a lot to be done to understand impact.
Involvement improves recruitment because it leads to better research, but there is still a lot to be done to understand impact.
I think what they showed is that there needs to be lots more work to be done on actually assessing the value of PPI. But there, what it has shown is that the study design is more relevant to the research and also, I believe, that the information sheets are better written and better understood from a lay perspective if you involve patients with the writing of the lay reviews.
Sharon would like to see more public awareness of research. Opportunities to take part in research should be just a normal part of clinical care.
Sharon would like to see more public awareness of research. Opportunities to take part in research should be just a normal part of clinical care.
Hopefully through social media. I think the future is probably going to be social media and I think much more of patients viewed as partners. I'd really love to see research and patient experience become more integral. So patient satisfaction surveys don't mention research, you know, they're just almost seen as two separate things and I'd love to see research as expected to be part of your clinical practice, clinical care. I think oncology is ahead of the rest of the specialities, I think it's probably, yeah I'd say it's ten years ahead of , of some other areas. So I would like to see research as viewed as part of your clinical care; good quality research; patients involved in shaping what the research questions are; funding that patients could take, could lead in some research projects and that the results are shared really widely and that there's good access for everybody to find out what's happening in trials and in what other results and just much more easy access of accurate information.