Marney

Age at interview: 53

Brief Outline: Marney has been involved in health research as a lay representative for about 18 months. She became involved after she had a stroke.

Background: Marney works as a maths teacher and tutor. Ethnic background: White/British.

More about me...

After she had a stroke, Marney started volunteering in her local Trust. This led to other activities, including an invitation to attend a national conference, where she heard a presentation by a representative from the Stroke Research Network and decided she wanted to be involved. Until then she hadn’t known that there was a role for patient and public representatives in health research, even though she had previously taken part as a participant. 

After her stroke Marney had some problems with language, concentration and fatigue. She has overcome her language difficulties, but is still grateful that she can contribute to PPI online using the computer, where she can work at her own pace and think about what she wants to say. By the time Marney became involved in PPI, she had made a good recovery. She doesn’t always feel it’s always necessary to tell people about her stroke because she thinks it’s often irrelevant in her PPI work. Her involvement to date has included reviewing information sheets and funding proposals, and she is a co-applicant on a project too. 

For Marney, PPI is about assessing whether research is valuable to patients and designed to encourage participation. She believes that by having a diverse range of views (researchers, health professionals and service-user representatives) around the table, research becomes more effective. 

Even though people don’t need to do lots of reading to be involved in PPI, Marney does because she wanted to make sure her opinions were relevant and that she could make her voice count. She said people have to ask themselves, “How effective can I really be if I can’t keep up with the same sort of documents that everybody else is dealing with?” She believes in the value of the patient voice in research, and finds it rewarding to work with researchers and professionals to ensure they understand what is important to patients. 

Marney finds PPI stimulating and she feels she can make a valuable contribution. The meetings she attends are enjoyable because they provide an opportunity for her to get to know other people and have interesting discussions. She found them exhausting especially at the beginning when there was a lot of new information to take in, but the researchers’ enthusiasm for her ideas made it rewarding. 

After they’ve been involved in PPI for a while, Marney thinks people should evaluate what they are adding. She thought it was important to stay in touch with current patients because treatments and hospital policies may change over time, so previous experiences may not be entirely relevant anymore. She would encourage others to get involved saying, “It’s a good way of engaging with life on a larger and related scale”. She also thought it was important that researchers involve patient representatives from the very beginning, so they can influence the design of studies and the recruitment of subjects.

Lay reviewers of a stroke research proposal felt the question wasn’t worth asking. It’s important not to waste public money.

I mean one of the things we do with the stroke research network, and which it also comes into the frame for that, is say, “Is this an important question? How valuable is this research question going to be for patients?” And rightly quite a lot has been made recently of a study that other academics were enthusiastic about and it didn't appear that it was going to be a problem for it to get funding. It was all worked up nicely and everybody was happy with it. It was then sent out for review to the lay reviewers and the response was overwhelmingly negative with somebody saying quite boldly, "But is this a question that's worth asking?" And actually everybody had a sort of eureka moment and in fact decided that, no if people felt it wasn't a question worth asking, actually they should pull the plug on it there and then, which is a very painful thing to do obviously for all the people who have poured their time and energy enthusiastically into it up until that point. But I think – and then it's now used to illustrate the fact of the value that lay input gives because NHS money or charity money, which of course has been given by other people in trust that it's used sensibly, is potentially getting wasted if it's not being used for the sort of purposes that patients feel really have value.

Marney found out research involvement was an option through volunteering at her local trust.

Well after a period of ill health I started doing some volunteering at my local Trust and that lead to being involved in other activities and ultimately in an invitation to a national conference for professionals, and it was while I was there that I saw a presentation by the stroke research network about their work and listening to that I thought, 'Yes I really want to be involved with that,' because it's tied up in a sort of general educational area which, as a teacher, I feel strongly about education and find new knowledge interesting.

And what was it about the, that situation that inspired you to get involved?

Well I could immediately sort of relate to it as being an area of interest but I suppose it was the penny dropping that as a member of the public that you could just step forward and say, "Well I'd like to do that." 

Marney can represent the voice of others who’ve had a stroke but are less able than her to communicate. Her background means she can bridge the gap between them and the research world.

Yes, so the internet has been important. It started as a source of information to explore certain aspects of my condition and to make contact with other patients in the sort of virtual groups and so on and so forth. But it also improved my language skills which came in part from being able to take the time to compose a message to other people and to get it into the sort of format that I felt truly expressed what I wanted to say. So with time of course you were inclined to improve in any case, but actually working at it by having to tackle documents and things for attending meetings also gave a framework for driving the recovery, I think, and also because I was perhaps in better health or in a better position to give a message from a group who were perhaps coping less well, less easily. Equally I felt that both I must be very careful that I was representing the opinions of a group rather than just myself, but also that I got out there and gave it because I can totally see why for professionals or researchers the process of trying to tease out some of these issues, it's time consuming and frustrating and slow and all those things, which are precisely the issues that stroke patients are struggling with. They too are irritated that things are slow and frustrating and all of that. But yeah, I felt I was in a reasonable state to go and deliver the message and collaborate with people and to show that it could happen and to perhaps… It was to bridge the gap I suppose it's the best way of putting it; I felt that I could potentially bridge the gap between the two because I did understand something. It's the academic world and what it might be like to be attached to a university or a research organisation and yet I also had a huge amount of sympathy with stroke patients. So it was bridging the gap. 

Since her stroke, Marney finds meetings tiring, although she enjoys meeting people. Contributing by email is easier because she can go at her own pace.

Well, in terms of time commitment, time scale, geography, travel concerns – if your health is an issue, if mobility is an issue, stamina. Some of the meetings I attend are five-hour meetings and yes we have lunch and coffee and all the rest of it – that's an opportunity to get to know each other better, which is also a valuable part of the experience, but it can be very exhausting. And so if your research focus is particularly targeted towards a certain condition that can make it more difficult to perhaps have your voice heard effectively than through other routes into research. So I mean, for example, if you were involved with something about attitudes to electronic health records, for example, that draws in a wide spectrum of people, but if your input is towards cancer research or stroke research or something, then your energy and ability to cope with all that's required may make it quite a struggle.

Fortunately I made a very good recovery from the stroke which is I'm sure in large parts due to the thrombolysis treatment that I was fortunate enough to be given. I didn't have any mobility problems but I had language problems and the use of the internet has been quite important in driving that recovery. Because if you're sitting with the computer, you can put in the time at your own sort of pace and there's nobody there witnessing your failure, shall we say. And particularly because expressing yourself can be an issue, emails are quite good as a means of communication because you can edit it, take as long as you want to get your message out, and all of those things.

Marney went on a training course bringing lay people and researchers together but it was not very helpful.

Mostly the research settings that I'm in people are all making good contributions and most of them have been doing it for a while so I'm sure time has honed their performance. However I went to a – well it was quite interesting – went to a workshop that was designed to bring new researchers and patients who were interested in becoming involved with researchers together to explore some of the issues. And these were being run by a charity with a facilitator that I have since found does a lot of these workshops. And although I would say eighteen months on, I've got reasonable experience of how the system works, I've also still got quite big gaps, and I was also interested in the process of how might one bring these groups together to make it work for everybody – because again, as an educator, I'm always interested in the process as well as the outcome. And it was co-chaired, as I say, by somebody, I'm not quite sure what her background was actually but she does a lot of these of these workshop, and also researchers, so the two of them were together, and we were a group of maybe about twenty people I suppose. 

But it was poor, the workshop, and I struggled a bit with the feedback form because you never like to give in something that's really negative. But then again it comes down to this thing, well are we all wasting our time here? And the people were nearly all, I think, making valuable contributions in other patient network things, that they were on the focus groups to this, that and the other, or they've worked with charities or whatever. So there was lots of potential there, but we just didn't really get enough done. There was no sort of meat on it and the facilitators didn't control some of the, what you might call, rogue elements, well enough to make it good for the whole and I do think that can be a danger. I've seen it in other settings of involving the general public. You're always taking a risk, which is why if you're looking for PPI involvement in something it's a good idea to have had them fill in a form first that says, "What transferable skills are you bringing to this? What's your interest in it? Why have you felt motivated to approach this? What other relevant stuff have you done?"

It’s disheartening if researchers don’t listen or show appreciation, and if little thought is given to the time and effort people have to put in.

It is of course time consuming, or can be time consuming, which, were it spread evenly across the months and years, would just be absorbed, but typically, of course, it tends to cluster. And it can involve quite a lot of reading and writing things up in order to do it well which, when that happens to coincide with other busy periods in other parts of one's lives can be exhausting. But as ever when taking on something new, the learning curve can be steep and that can be tiring. But I would say all of its worthwhile when people are appreciative and listen, and you get a sense of moving forward together. That's the real reward. And in instances where that doesn't happen, that is the cost. The biggest cost I might say is the sort of erosion to the spirit, shall we say. But it can be financial cost and for some people, quite rightly, they are very meticulous about collecting their expenses and where it's not offered, I mean people will always say yes if you ask, but actually it should always be offered.

Rather than you having to ask?

Upfront rather than you having to ask, which is the sort of take home point. And then where it isn't, it's mostly just people who have forgotten about it or other things have intruded but, yes… I mean one study I was taking part in, the conversation came up obliquely and I mean I'd been involved with the project for well over six months, and the researcher suddenly said, "Ooh well yes, I'm sure we've got a component for your fares if you would like it?" And sometimes the timing of things is not, well I mean you have to make your timing fit with everybody else's professional life, which I think you just have to accept. But they have to be aware that, for some people who may be physically more frail, they ought to be trying to think about how people get into the building and whether the room's warm enough and all those sort of physically comfortable things. 

Involving people at the last minute is bound to be ineffective and unsatisfying for everyone.

And you've been involved in PPI and research for around eighteen months or so, and how has your sort of, your experience of the first eighteen months been?

It's certainly been a steep learning curve. It has thrown up a number of points around issues of what constitutes good practice in this area and how some people involve patients very well and other people have not really taken the time to think through what participating could mean for this patient. It needs to be fleshed out a bit more fully than, ‘Well they said they wanted to so let's get on with it’. So certainly everybody tends to find it more satisfactory if people are involved in the conversation from the beginning. I've been involved in one or two things where the patient has been brought in quite well down the organisation or route and then where they raise issues, which are acknowledged as valid, but which run contrary to the sort of direction in which things are moving at present. It's just too difficult in terms of time spent and finances spent and where everybody's head space is, to turn things around to do it better. So involving people at the beginning is really important and making the effort to foster the communication, the team work, and the attention to detail so that you move forward as a close knit team. Everybody then finds it very exhilarating and my experience is not only do the individuals find this rewarding but I've seen researchers get really very excited about how real the whole thing seems as opposed to sort of theoretical and academic. So they can start to see how the research they're doing is really going to benefit people so it gives a sort of extra sort of brilliance to it. It makes it more exciting and engaging.

People who ‘have one angle to push’ can be frustrating for everyone.

But people's time is precious and the idea is to move on and achieve something so what's really difficult is if you take somebody on and then it becomes apparent they are not going to be helpful to you, how do you then disconnect them from a project. So it's fairly easy if you're a researcher that wants somebody to comment on your funding bid or something. I mean hopefully you have half a dozen people or more who have sent you their thoughts which then when they're combined improve your bid. And if five of those gave really helpful input and one didn't, well then you just don't ask that one on another occasion. But if you've got somebody on board for the duration of the project and they drive you nuts, then you've got a problem and I think it's valid to recognise that.

That's an interesting point and I sort of hadn't thought about that before.

A team has a dynamic. And as I've said before communication, teamwork, attention to detail helps make it work. But there's always occasions where you will get the personality clash and you have to, you have to have a strategy to deal with that. And just as some people are still not, they haven't really got their heart in the project of really using patients. It's just something they sort of feel, 'Well I've got to do it,' rather than really believing in it. So there are equally some patients who just have one angle to push and who aren't able to take a more general outlook on something. And they're a problem as well.

Marney likes to follow up face-to-face discussion with an email. This sometimes starts another conversation going.

Well, given that I do an increasing amount of PPI work, I do sometimes follow up and then counter with reflections on the day or an email to check that the messages that I wanted them to take home have really gone home by putting it in writing. And, because I can edit it before I send it, I can be entirely happy that it's truly me. And it gives them the opportunity to painlessly forward it to other people, people who they think might take an interest or to file it for future reference or something. And I think quite carefully about how to make the point really clear in a “teachery” sort of way by using bold and colour and so forth.

And yes the stuff I do with the stroke research network – sometimes you'll have an email conversation backwards and forwards with somebody and then clearly that person has had a verbal or email conversation with somebody else and then you'll get an independent email that comes round and you get another conversation going.

And how do you feel about the fact that you might be passed around like that and other people might be able to access you?

Oh no I like it; I like the fact that it has the written dimensions so that there is much less scope for any sort of ambiguity. I mean I suppose people could be cutting and pasting bits and introducing aspects that were not where the message was really intended but broadly I think it's safer than a sort of a ‘Chinese Whispers’ thing where one person tells the next person and the next person thinks, 'Oh well yes, it might be useful for something else,' but the message gets twisted when its told one person to another. Whereas if you've emailed something it tends to get passed on in its entirety or at least paragraphs can be cropped and passed on. So I find it a very useful tool for moving things along. And other people like it and it cuts down on their work, which is also why I do it. So to be helpful you have to put yourself out to see something from another person's perspective to make things go more smoothly.

Marney receives feedback on how she has made a difference to research.

Do you get feedback or do you get any indication of whether they have used your feedback and acted on it, and what has changed as a result of it?

Well only in the sense that I get the document, I look at it, I flag up, typically I would say three to four specific points to address. I usually try and give an overview as to whether I think the project is, you know, is valuable or interesting or, all those sort of things. So there's a broad sense in how's this project been received, so I tend to give that first and then I say these things, I think, could need , usually fleshing out further, you know I may say things like , "It's not clear to me how the psychologist on your team is to be used, are they going to be used to ensure people are able to give consent or to choose appropriate screening tools for their reaction to something?" or you know, so, so that sort of thing, or issues particularly, as I said, issues around if you're going to require the patients to go through all these tests, I think you're going trouble recruiting them. Or, this is going to be, you know, if it's taking medication and coming weekly for blood tests and, you know, having spinal fluid taken and, you know, these sorts of things. I say, "I think you're going to have a significant fall out rate because this is very difficult to live with if you're also dealing with recovery say from a, you know, from an illness." But the level of feedback I get usually says, you know, this is really useful, we're going to incorporate it all or, you know, this is useful and we'll explain further here or yes I see your concerns but actually I'm restricted to a hundred and fifty words and I've already bottled it into a small a space as possible so it's not possible for me to develop it, or …yes so people tend to give me an idea of how they're going to use my information, which of course is important because that informs how I react to the next set of reviewing that I do.

Monitor your performance and think about how and what you’re contributing.

I mean if we review that, the positives – I think I've mentioned it at some other point – is I would say, “Here is an opportunity. Is it interesting? Is it worthwhile? Do you feel you can make a contribution?” And the researcher may need to offer you enough information, flesh it out for you to be sure of that. But if you're interested in the general concept and you feel that you can say yes to all of those things, then get stuck in and especially at the beginning it's reasonable to expect people to come slightly more than half way to make you at home and encourage you. But equally you've got to be really mindful of what am I contributing. You've got to put yourself – well all parties have got to put themselves in somebody else's shoes. 

But, and you need to realise that time is precious and you'd better get to the point as swiftly as you as you reasonably can. Some people find it difficult to be sufficiently succinct or to the point to make their presence at the table really valuable. If you can monitor your own performance and by the attention to detail aspect I was talking about earlier, you've got to keep assessing your performance I think in order to be made welcome at future events. So yes, so it's a two-way thing.

Involve people early on; your research may benefit in unexpected ways.

Well undoubtedly involve people right from the beginning. Give them enough information about the sort of context and what you're hoping in the first instance that they be able to provide you with, but remain open-minded about what surprises may come your way. Because, if you initiate the conversation, like all conversations, it tends to develop and you will probably get something really valuable from it that you never anticipated. So be open, be welcoming, be thoughtful about what they might need to help make the role easier, and remember that the environment and the terminology, and all those things that you are completely happy with, are likely to be unfamiliar to the person that you're talking to, so just be sensitive to draw them into the picture.

Research often shows there is a need for more information, but producing a leaflet isn’t enough. People also need verbal information.

I've had conversations with researchers. Often leaflets are brought up as the sort of answer to problems and I quite frequently say that I think there are quite a lot of issues around leaflets. People are always saying, patients are always saying that they want more information and the researchers and medics tend to respond to this by producing a leaflet and when patients say they want more information; sometimes they do indeed want facts but very often it's much more complex and what they really mean is they want to get their head round what has happened to them and to integrate their experience into their sort of life story and that process hasn't yet happened and the cry for help with this is, "I need more information," but that's not how it's received, it's more complex than that. 

So the leaflet may help with this and leaflets are very good for reference but in my view leaflets are pretty much useless if they're not, if the content is not discussed by a person with the individual. So if someone has a particular condition and there are certain bits of information they need to take on-board, that needs to happen in a conversation and then you say , "Now this leaflet summarises some of what we've talked about and you may want it for reference," but to be valuable it needs contained within it sign-posting to some other source because with time people's needs change so the leaflet will only ever answer somebody's needs for a limited period of time, and if you're lucky, it's the period of time that the patient is in at the point at which they're given the leaflet. But, but that's very often not the case because it's a fairly blunt tool. So they are useful but I think professionals tend to only see the benefits, whereas patients have a much more limited enthusiasm for leaflets, and many are filed but never read and I think quite a few sit around on the table for a few days and then they go in the recycling. So leaflets need handling with care [laughs].