Margaret

Age at interview: 63

Brief Outline:

Margaret became a PPI representative about three years ago after she was diagnosed with cancer. At that stage PPI in cancer research hadn’t been established in Northern Ireland, and she was invited to get involved in implementing it.

Background:

Margaret is widowed and has one daughter aged 30. She is retired now, but previously worked providing information and support to patients undergoing radiotherapy. Ethnic background: White British.

More about me...

Before she was diagnosed with cancer, Margaret worked in radiotherapy. After her diagnosis she was invited to become a PPI representative. In Northern Ireland, where she lives, PPI stands for Personal and Public Involvement. Margaret sits on several groups, including a trials committee and the Northern Ireland Cancer Research Forum, which she helped establish after advertising for members; people living with cancer, who were interested in research. 

Having attended Macmillan’s Building Research Partnerships programme, Margaret became a facilitator training other people in understanding research. She thinks there is a lack of understanding about research among the general public, which she feels is important to address in order for people to make informed decisions about taking part in research when they become patients. Through the forum she has organised some training events for members, which cover things like understanding the jargon in research and how to review information sheets. She has also been on tours of research laboratories and attended ethics committee meetings to see what actually happens during the processes.

Margaret chairs the Cancer Research Forum, which is made up of over twenty members, both patients and carers, who all share the PPI workload. She enjoys her role as Chair and admires the others she works with. Although they work together because of the common link of cancer and have faced stressful and sad times when members have died, the forum is not seen as a support group. 

To be involved in PPI, Margaret thinks people need to want to have a say in research and must have something that motivates their involvement. They should be willing to work and give their time, but only as much as they can. Margaret’s aim is to improve treatment, care and quality of life for future patients. She said she was very grateful to previous participants in clinical trials who were involved in testing the treatment she received for cancer, so is partly motivated to take part to repay them for their contribution. 

Although she believes in the value of PPI, Margaret thinks its impact needs to be assessed so that it can improve. Because research relies on facts, she would like to see evidence about the effectiveness of PPI, but thinks it’s difficult to get an accurate measurement of its benefit. To be transparent about impact, she said it was important for records of PPI input to be kept, including in research publications in which researchers should acknowledge the input they’ve had from patients and members of the public. 

Margaret loves being involved in PPI and said she gets more from it than she gives to it. She believes it enhances research, and encouraged researchers to be open-minded and think about representatives as more than “tick boxes”.

Margaret feels she’s giving something back for previous research participants who made her care possible, and improving treatment for future patients.

And that's one of the big reasons why I've become so passionate about research because I realise that somebody, all those years ago, said yes. Said yes to those chemo drugs, said yes to the dose of radiotherapy in a clinical trial, and said yes to taking that drug that I took this morning, and I've just come to admire those people who have said yes to clinical trials and I think they're very special. And if I could thank them all for all over the years I would but they've meant a lot to me because they've got me where I am today.

And so is there an element of giving back then in your sort of participation in PPI?

Yeah very much giving back, giving back for the treatment that I got and the care that I received, and anything I give in PPI is nothing to what I get back out of being part of it and that's being very honest. But certainly I just see it as being a partner with researchers and helping to improve treatments and quality of life for other patients coming out of this right from the initial bit of what's done in the lab, right through to what it means in changing services and treatment, and my part might be very small and that but I think you bring who you are to it – bring your experience of being a patient and that's unique round that table. Everyone us has been a patient or, or been a carer, and the experience we've had of the impact of cancer and treatment and diagnosis on our lives, has something to say around that table with researchers as partners. I don't become a researcher, I don't become a research doctor or a nurse, I don't become a scientist but I bring something unique to the research and that has been exciting for me.

Margaret has worked both on individual trials and on national and European committees. She has given interviews and made a podcast to raise awareness of research.

As a PPI rep I sit on different, different groupings, i.e. I was invited to sit on the Northern Ireland Cancer Trials Centre Executive Committee as a public and lay person. I was also invited to sit on the Northern Ireland Cancer Trials Network Steering Group which looks at the, all the clinical trials that are going to happen throughout Northern Ireland. I sit with other members, other PPI reps after reviewing every clinical trial within the cancer field that's happening in Northern Ireland. So with an input in looking at information sheets, and if they're national or have already been improved national or international trials, obviously we're not able to change wordings because of ethics, but what we do is highlight to researchers a word or a terminology or something that maybe needs just a little bit of an extra explanation to ensure that people are going to be recruited to the trial. I mean that's, that's one of our main things is to ensure that a trial is worded, is run in such a way that people will say, "Yeah I want to be part of that." Being involved with local researchers, before they're ready to go to , to ethics at the trial designs stage and looking at what they're going…this question they're going to research and how and when they're going to approach patients, which is obviously quite a , an important area that can either make or break recruitment of researchers. But involved in many of those and steering groups, but, you know, steering management groups for clinical trials luckily in my area. 

I also represent my area at a national level at the NCRM, and that's a cancer research network and at a cancer research institute, a PPI steering group. And that has been a real privilege, so and when I went there at first, when I didn't know very much, not sure that I know much more now but, well I didn't know very much, I was just getting knowledge from people who, who were there and doing it, and now it's very much a sharing of knowledge through a UK group and that has been exciting that it's not just things that happen in London, but PPI is important, no matter where you live within the UK. Also the privilege of being part of a European group project of the European Organisation for research and treatment of cancer, that has involved being in Brussels and reviewing protocols and information sheets for trials that are European based in that translation, but of how it translates into English. Been involved in just being in newspaper interviews about why I want, why that I feel research is important and why I'm involved in it, done several newspaper and a podcast for our local university to explain what it means to be involved in research. 

Margaret helps run joint training for lay people and researchers. It helps researchers see how people can help rather than hinder research.

Although there's one area that I have been involved in that , over the past six months that has really been very exciting and that's been part of building research partnerships which is a workshop day that brings together researchers and people who might want to be involved in research, and we spend a day just looking through different areas and quite often that a lot of researchers have never met or sat in a room, at that point, with people who are, with lay people, and I really value that as a course in building research partnerships. It has run several times locally and it's going to run again in the next few months and that is an experience for both sides of the fence, but it's like being together in a room talking about different aspects of what research is and that has been invaluable, not just for PPI people but for researchers and a lot of them would acknowledge that perhaps they have never spoken to a lay person or they've spoken to them and, a bit like in a corridor, because they need it for a grant, and said, "Hello, how are you? I'm thinking of doing this research," and what, what I really am passionate about is ensuring that PPI is not a tick box exercise, that it's not, you know, oh I have to say, if there's a box here I have to say I've spoken to somebody in the public. 

It's a working together and a partnership and a collaboration and we've things to give, not to hinder research, but to enhance a researcher's life. And sometimes that takes a while for researchers to have an understanding of us as well that we're not sort of like aliens [laughs] and that we're not there to batter them or to question just for the sake of questioning, and so that's also a part of the, our PPI forum. One of our, another one of our aims is to, in inverted commas, 'educate' researchers and inform them of what PPI is about. Yeah so that's it a new neutral acceptance and not something to be frightened of.

People in the group Margaret works with are from various backgrounds and age groups who contribute in different ways.

Well there are people who have retired, sometimes from teaching, we're people who are in their twenties. One girl in particular whose mother died with breast cancer and who felt that she wanted to get involved in some way influencing it. We're people who range from people in their twenties right through to people in their seventies. We're people who have worked in a shop all their lives and bring great communication skills with people, we're people who have been scientists and been involved in chemistry and different things like that, who bring different skills. 

Whatever anyone's background is, it's important because they just bring who they are, and people are involved at all sorts of different levels. Not everybody wants to be involved on a trial management group, not everybody wants to sit on an executive, but all of them want to be involved at reviewing what information the patient gets. 

The coordinator gave Margaret a list of common terms, and she has always felt able to ask any questions. Having a mentor can be useful.

I mean the biggest thing was probably at the very beginning was looking at acronyms that are used in the research world and even the, well, what a phase one, phase two, phase three trial was, or a randomised control trial because you sat and you heard RCT [randomised controlled trial] and all of these things, and that my PPI lead did give me a list of acronyms but you know it took me quite a while to actually link the acronyms with what the areas were that we were working in. And I suppose sometimes you slip in to using acronyms yourself which at the beginning you would have said, "Oh no, no I've never used those but, but you do. But that's important, that whole support from professionals has been really important to me, that there is a person, there is, in my case it's a lead nurse who is the PPI lead and I've never felt, when I've asked a question, that the rest, even round the executive that everybody was rolling their eyes and thinking, 'She's asking a question, she doesn't know anything about that.' Never, they've always been very willing to answer me and that is so good that you feel that no question is too stupid that they're willing to say, "Well let me explain this about research to you," and that's a big thing when you're, when you're new in PPI or even as you go along that that's, you have someone who like is a mentor who can explain a terminology or even things like how drugs are funded and you know that whole process that is like an alien body to you and totally another language. 

Margaret doesn’t feel how she is valued depends on whether she is paid. She puts in a lot of hours but she can always say no.

The argument is that if you're of value you're round a table then, you know, that should be shown. I don't personally believe that shows my value because somebody pays me. I think my value round a table is the fact that you've; you have earned the right to be respected and have a voice round that table. So I don't feel on a different par to doctors or scientists because they're getting pennies for being there, pounds probably. I don't feel that but not everybody in PPI would agree with me. I would have to say most people in Northern Ireland, PPI reps would agree with me, other PPI reps if they heard this would probably be horrified at me but , but that's to say I don't feel that it undervalues me or undermines me or says you're not of value. 

But maybe that's a personal thing.

Yeah

And I couldn't really speak for people, that would be dishonest in being able to say this is what they all think, it's personal.

Yeah, no and I think that's a very important point isn't it because value and money are two different things.

They are different.

But they can often be confused.

But yes and I think, I think that is yes, and I probably do think, you know, that of the number of hours that sometimes you put in thinking they're laughing in the Cancer Unit saying, you'd get Securicor if we had to pay you, you know. But I don't feel I'm being misused or abused if you know what I mean because I have the right to say no.

You know the porters do laugh and say, "I'd thought you'd retired". I said, "I have because nobody pays me anymore". But in saying that I do have the right to say, "Well no I'm doing that, you know, I do have other things that I do as well." 

Margaret loves the science and admires the researchers she meets.

Oh it's been good, I enjoy it. I see much more and I get much more back than I ever give. The number of people that I've met, other PPI reps throughout the UK is just, is great and gleaning their experience, I mean that's, you know, I pick people's brains and they're always very willing to let them be picked and that the research that's happening, that has just blown my mind.

What has really blown my mind too is doing lab tours and seeing the months and years that those scientists put in at looking at a little thing that size of cells, looking for something, at something and perhaps after years their question isn't answered, it's shown not to be an answer. And I just admire their passion for what they're doing. So I admire, I've come to admire the researchers because I'm… it's more than just like a job, I've come to see, to the majority of them, they are, they're passionate about what they do and why they do it, and I would just like to support them in that and that's what I would say about PPI. I enjoy it; I mean why would you be doing something you didn't enjoy? Do you know what I mean? [Laughs].  

And so yeah I enjoy it immensely, I would say to anybody to, to think about getting involved in research, it's not frightening, it's a bit off-putting at the beginning because you're hearing all the acronyms and all the terminology and it's like a different, you know, a different language but eventually you come to understand enough of the language to be able to understand what's going on, and I would say whoever you are, you've something to give in PPI because you are unique as a person and you bring your skills, your life skills and all our life skills are different and that's why it's important to have a whole range of people involved in PPI so that benefits research and benefits people at the other end of the scale. So yeah don't ask me that question because I'm very passionate about it [laughs], I'm surprised how passionate I am about it.

Really?

If somebody had said to me three years ago, you know, when I said oh yes to this whatever this PPI was I would have, I…yes, totally, totally thrown myself even at the passion and the understanding that has come about, and you might think that's very strange for somebody who’s worked in the NHS all these years, but I would not have had the, or a new research happen, but not the understanding of the importance the benefit, how nothing moves forward without it or nothing will change without it. Yeah so I would invite everybody – put your toe in and if you feel you want to put two toes in the water of research that's alright. If you want to put, immerse yourself in it, that's also OK but you'll find that people, there are PPI leads, there are researchers, there are other PPI people who are willing to share what, the knowledge that they've got already and that's a great support mechanism, and you do feel as though you're doing, let's be honest, you're doing something of value. You'd be wrong not to acknowledge that, that you get something back from doing that yeah.

Margaret feels what she brings is a unique personal insight into the experience of cancer.

I bring something unique to the research and that has been exciting for me.

OK and so what is it that you bring? 

I bring my own unique experience of what it has been like to sit in a room and say, be told you've cancer. Two: a unique experience of what it meant to me to have treatment, the unique experience of surviving and living of having had cancer, and so that is a unique experience to me and where it's appropriate then I can share what it feels like to be there and what the impact of different treatments and the way even people explain treatments, all of that, what that meant to me and I can't say that it means that to all patients, can't speak for them all, but I can speak for how it affected me and the impact on me, and on my life and on my family.

You bring who you are because before I was ever a patient it's a person, and so the life skills that you bring from all the experiences which you've had through life, whatever they were, the good ones and the bad ones, through your working life, through your family relationships, through all of that impacts on who I am as a person and that's what happens when I'm round that table as a partner with researchers, just who share what is experience on a personal basis.

It’s been a slow process to overcome a ‘them and us’ culture, but now researchers just expect lay people to be in the room and to have a say.

Researchers and professionals didn't really have an understanding either of what a PPI rep was or what they were meant to do, and that's been a gradual work in process, where now that we're, when we're in a meeting where they're peer reviewing a new clinical trial. Well everyone has a say, sort of the nursing aspect, pharmacy, radiology – there's always now a slot for PPI and so that it's done on an equal basis for what is said to review a protocol and information sheet, and just a trial and why we would support it for a patient or… one of the things that a very wise gentleman in London told me at the very beginning. He said, "One thing you always look at when you're selling with research, for better trial is, what impact does this have on a patient and for a patient." But that's a very basic question and that's really how I've always looked, before looking at other aspects of a clinical trial or any study it's going to happen. Well look what does this mean to the person that these researchers want to do it to? And I just think that's the basis for starting around that table. So there's been a slow process perhaps of professionals thinking, 'Oh there's somebody who’s like public sitting around our table,' but that has gradually just, with experience become something that is a partnership, as opposed to oh them and us, or professionals viewing the PPI rep is somebody who's going to hold up their study or put a like a spanner in the works as opposed to realising that we want good research because it impacts people in the other end.

Margaret advises researchers to make a start with any patients they come across.

There's a lot of sort of organisations, supportive networks, for cancer patients isn't there?

Yes, oh yes. I mean miles ahead of ….

Of other types of illnesses. 

…and, well I suppose heart and the rehab are there but certainly within research in Northern Ireland the other clinical networks have not got any PPI. I spoke to about sixteen research nurses before Christmas and said, "How do we start," you know and we just how we started. I said, "All you need is one person," I mean they only need one person, you know, you don't have to have a forum, you just need, you must all know a patient who, you know them well, ask them would they do this. Bring them to a building research partnership day, come together you know and they said, "We'll just go to Margaret," and I said, "No, no, no, no you mustn't say that," you know because the whole NIHR thing is working across, you know, across disease sites.

As opposed to being specific so we're doing quite a lot of work, how we got started in cancer PPI research with the other network for the rest of Northern Ireland, but it's that getting started is the big thing.

Margaret thinks involvement can have a positive impact on every part of the research process.

I think, you know, we have a part to play in that in every part of the research cycle but just in even framing a research question – is it of value to ask that question or does somebody just need to be able to write it up? And even tweaking how a question is asked can make a difference to people wanting to be involved and I think you want people to be involved and be part of the trial or study or whatever it's looking at so that there's a benefit at the end.

Evidence for involvement needs to be more than anecdotal. We need to know what doesn’t work and a recognised scale for measuring impact.

I think that's a very big question because it can't just be anecdotal: “Oh it was really good because we had PPI input”. And I think that's the way forward in PPI is finding a way of, of measuring that as being real. Now in the short time that the forum's been going, we have done it by asking researchers to feedback in what they felt the impact or the input was. But I know that there needs to be a lot of more – in inverted commas – “research” done in how you measure that. I am very convinced of the impact but, but there has to be some tangible way of presenting that and the only thing that we could do in our first year report was simply quote what researchers said. But that's not probably a very scientific measurement but that is an area that is, are, I'm not sure how you measure the impact. I mean there's all these conversion scales and all of those but there has to be some way because otherwise you are anecdotal and saying, "Oh yeah it makes a difference," that is, so if you can tell me the answer I'd be very pleased.

Yes I think so, yes and maybe it is, maybe it is a scale but it's a recognised scale and that, you know, if you've had PPI input at some area of your research cycle that they refer, return it back to the PPI lead and say, you know, "Score," there's that I mean, you know. I mean there are many different toolkits about at, at how to work as a PPI but we need to be a universal way of the scoring as such for the impact that gets beyond the anecdotal.

And I think that's the next big step in PPI that has to be found, how you, how you show that that was a good… an impact for good or not good and then you look and say, "Well why was it not so good in that area? What was the perception that made it like that?" But you can't keep going round saying, "We know this is good."

In a research without any evidence yes because we don't live in that sort of world.

But I'm not sure how you actually track that down.

Researchers need to think about the language they use when presenting information to lay people. They should also provide a lay summary of the study results and acknowledge what lay people have added.

Yes I think they have, the researchers have to write in that way for academic papers and for publishing and everything, of course they do. But I think it's so much their everyday language that sometimes they think what they are presenting to lay people is as, you know, at phrased down area, when actually it's not, you know. It's a bit like this plain English, you know, why use ten words when you could use one? And that's a learning process as well I think, because obviously to present papers, they have to be written in that sort of language, and I think that's a working together that happens and being able to say, you know, perhaps there’s a word that says the same [laughs] thing but this may be easier for people to understand. And we would also request, if they don't send their protocol, that they're going to do a lay summary of the results. 

We would say, "Would you consider doing a lay summary so that it’s understandable results?" I think it's also important for researchers to acknowledge people who take part in, who actually take part in clinical trials. Simply you know the ovarian group that took part in that big trial sent thank you cards, and we were just looking and discussing that and how important something , we might think very simple, but it's an acknowledgement that people are actually doing something. Now there might be people who never want to know the results of the clinical trial they were in or anything, that might be true, but I think for those who do, I think it's good for researchers to acknowledge that people are saying yes to their trial or their study or whatever they're looking at.

And so you think that as routine there should be a lay summary of the finding sent to participants of research?

Yes or available for participants of research, perhaps not all would want necessarily to have it, but I do, I think that's really important because without those participants the research wouldn't have happened and that, I think, it’s important that there's an understanding of what the results mean.

And I know they have to be published in a certain way and presented at groups. I think it's also very important that researchers acknowledge lay input when they're writing up their research, because they'll name, you know, everybody, the profs this, the doctors that and research assistants, all sorts of people, but I do think it's important that if they've had input from a group or from a person who is a lay person, that they're equally acknowledged and I think that is important.

Margaret sees involvement as a way of informing the public that research happens. She’s been involved in events aimed at raising the profile of research.

I would also see PPI as being a way of informing the public that research happens. So that whenever you go into a hospital, way before you'd be diagnosed with any disease, but you would have an expectation that somebody's going to talk about research and the value of research. So it's not been thought of, 'Oh I'm going to be a guinea pig, they want to do something to me.' So part of our work as PPI reps has been to inform our local area, the public that the sort of research that's happening where I live and how important it is and how we're moving forward. And so those are just small steps but I think to educate the public that research happens and how important it is and it's not to be scared, they're not to be scared of that. That you'd walk into any major hospital or an area where people are doing research and be willing to listen to what they say, not always to sign on the dotted line but be willing to listen.

We had an education evening to…we invited the general public to, to come and to hear what was happening in the area where I live. And the researchers were more than willing to come and share their research which was amazing stuff. But what was the really important thing was that they were willing to talk in terms and words that we could all understand. And people came in and I think they were just amazed at what is happening because they had no concept of, of the level of research that is going on. They'd heard the word but they had no concept of the level, and really what happened, there were ninety people turned up on that specific night and what had happened is that those people had gone out and told other people about the research that's happening. We also had been publishing newsletters on a quarterly basis, I had to go round different areas, usually with lots of photographs because people look at things with photographs, but just to say some of the things and some of the projects that we're involved in because people like to always see a photograph, like to read it, but what it's doing all the time is saying research is of value, research needs to be done if we're going to improve things for people and that's just an education. So that's the area where we've been involved with and it's specifically in the past few months in raising the profile of research.