I’d worked as a staff nurse for a number of years when I had an accident that meant I needed major surgery on my spine. As I got better, I started thinking, ‘I’ve got to do something with my brain’. I had a pension, but it’s hard to go from being the main breadwinner to feeling you’re suddenly way down in the pecking order. I’d cut myself off socially, too, so needed something to keep my brain active and help me meet people.
I’d done research before, for my diploma and my nursing degree, and had always loved it. For me, working with Involving People was a way of carrying that on, without the pressure of having to get a study in or keep to deadlines; I could do it in my own time, and choose which projects to work on. I also wanted to know what new ideas were out there, because I felt that patient care wasn’t what it should be. As a nurse you get to help people and I didn’t want to lose that, and I felt that this was a way I could make a difference.
I think the best way to explain what lay representatives do is to give an example from a study I’ve been involved in. Myself and another lay representative were involved from the planning stages of the study. Our main role was to read through the patient information leaflet, to see what needed to be changed. My first thought was something that turned out to be an issue in lots of studies – too many big chunks of text with nothing to break it up, and a title that wasn’t patient-friendly at all. ‘Randomised controlled trial’ might be great for explaining your study to researchers, but what does it mean to the average person?
After the other lay representative and I had made some suggestions to the researcher, the three of us spoke to a chap from a respiratory charity, to see how a potential participant would find the study. It was really interesting to see the research from another angle. There were all these problems in the study that he pointed out – things like not communicating by email, because he never checks it – that we wouldn’t have picked up on otherwise.
As a lay representative, I felt I could communicate with this man in a different way to the researcher. The researcher was fantastic, but she was nervous, and stuck quite rigidly to the list of questions she’d worked out. Because it wasn’t my study, I felt more free to pick apart the questions to figure out how they’d been understood. When there were things he wasn’t sure of, too, I was sometimes in a better position than the researcher to explain.
With that study, another thing I gave feedback on was the length of time from being initially involved until the researchers got in touch again. That’s something I’ve noticed in every single study I’ve been involved in – you often don’t hear from them for six months at a time. You don’t need much, just a text or an email, to remind people that the study’s still going on – or even that it’s on hold for a bit. It’s an issue for lay representatives when we’re involved in the research, and for participants in the studies. You want to feel valued – to feel forgotten is really dangerous and damaging. Dropout rates in research are a big problem – so keep participants interested, let them know what’s going on! It improves research so much when it’s done well. Even something like a card, saying the study’s still going, and we appreciate all your help. You can’t beat a thank-you, can you?
It’s good to know what they’ve done with your feedback, too. Some researchers are great at keeping in touch throughout the project, and letting us know how they’ve used our comments, but there are some studies where I’ve been involved at the beginning and then never found out whether they followed any of our advice. You get psyched up, think it’s really going to take off – and then you just never hear anything else.
Lots of the researchers are really brilliant, but don’t quite realise that things like that are important. They’re focused on answering the research question and, even though they don’t mean to, they sometimes forget about the human element. That’s why we need lay representatives, to make the researchers understand what it’s like from our point of view.
Making a difference
At the beginning, I was quite frightened. Our social lives tend to revolve so much around work that if you’re not working, it’s easy to get quite cut off, and then hard to get back into the loop. But when I went to my first meeting, there were so many other people there who didn’t have a clue how things worked either, I stopped being scared. You can be yourself, you don’t have to worry about how you’re coming across – the point of being a lay representative is to be a normal person.
For one of the first studies I did, I was sitting on the train to Bangor, reading through the notes, and suddenly thought – ‘I’m on a train, 42 years old, on my own, no husband and no child’. And it was liberating!
I’ve got a huge amount out of the work. The researchers and all the other people we work with are very good about making us feel that what we’re doing is valued. That was amazing for me – all my trains and everything were booked for me, I didn’t have to worry about anything. And I’ve met so many new people – you get this whole new network.
Hard at work: me at a conference, discussing a presentation with one of the researchers.
I think ultimately it’s about getting researchers to understand the importance of listening to people. They’ve got this idea that their research is going to be of value, which is fine, but if it’s going to reach people they need to be in the right mindset to accept your feedback. I worked with a particular researcher who got quite shirty and wouldn’t believe that there was anything wrong with the questions. And then you have to try and explain that if you want people in a particular demographic to take part, you have to word it so they can understand. Researchers need to understand that you’re telling them because you want the study to go well.
“I always imagined it all in labs”
The work I’ve done with Involving People has opened my eyes to research. I always imagined it all kind of in labs, not realising that humans make up 99% of what is good research. Sometimes when I meet people now, I’ll connect them to research too, say “there’s studies going on into this, you can find out more about it”. That’s really valuable, I feel I’m giving something back.
I think people need to know that there are organisations like Involving People. Even if you’re working full-time, do get involved, there are research opportunities out there. And if you do get involved in research, you will make a difference. You might have to rattle someone’s cage every now and then, but ultimately you’re working together to make the research better.
Involving People is part of NISCHR CRC (National Institute for Social Care and Health Research Clinical Research Centre), funded by the Welsh Government. It is the national patient, carer and service user research network for Wales, connecting researchers with the Involving People Network, over 300 members of the public who can bring their knowledge and experience to research. Involving People provides training for its network members, to prepare them for and support them in their involvement, and can cover expenses and payment for time to ensure that members are not ‘out of pocket’ when they get involved in research.
Involving People is committed to public involvement in research, believing that it leads to research which is more relevant, more reliable and more likely to be used to improve health and social care services. They support researchers in Wales to actively involve people, not as the subjects or participants of research but as collaborators, working together to plan, manage, carry out and present research. For more information on Involving People, please visit their website.
DECIPHer’s public involvement lead, Hayley Reed, is working with Involving People to increase the number of adult lay members on trial steering groups in DECIPHer. To find out more about DECIPHer’s current public involvement work, see the DECIPHer website.