Ben

Ben has only been involved in PPI in health research for about 6 months. He has reviewed Participant Information Sheets for research.

Ben initially became involved in health research as a participant. He got chatting to a research nurse at a birthday party he took his son to and she invited him to take part in a clinical trial as a healthy volunteer. The trial was about asthma, and Ben’s participation involved being weighed and measured, giving a blood sample, having his blood pressure measured, doing some lung function tests and having a bronchoscopy. He was then invited to become a recruitment officer for the trial and has been trying to find participants for it since.

As well as participating in the trial and recruiting for it, Ben was invited to become a PPI representative. As the PPI rep, Ben reviewed the pre-trial information pack to assess and make recommendations to improve its readability. He thought there was a need to retain the complex medical terms used in the information, but stressed the importance of a colourful, attention-grabbing, easy to read leaflet.

Ben attended a PPI workshop run by a large cancer charity. At the workshop they discussed how best to involve patients and members of the public in research, and what barriers they might meet along the way. One of the key recommendations they made to the charity was to encourage researchers to speak in lay language, and reject jargon and acronyms. Attending this workshop reinforced to Ben that he could have a valuable contribution to make as a PPI representative.

Although Ben originally got involved in health research as a favour for a friend, he soon realised that he could improve things for others and this is one of factors behind his motivation to be more involved in PPI. He would like to see a nationwide campaign launched to encourage others to become involved too.

Ben is from a medical family but it wasn’t till he got involved in research by chance that he realised how much hed enjoy being able to help.

Age at interview 49

Gender Male

Do you feel that it’s sort of changed you and changed your, your view of medical research, now that you’re sort of in there and trying to recruit people or thinking about these patients that are suffering from

Oh hugely. I come from a medical background. Dad and his three brothers and all my uncles were GPs. And I was answering the phone thinking that was, you know, great, Dad was getting up in the middle of the night to go and do visits as he was. But I never really thought of the patients, per se. Obviously I’ve been a patient, you know, myself occasionally, but had never really thought about research. Just hear the odd horror story, several years ago someone taking some pills and it didn’t go very well, all on the news and things like that. But other than that, no, not at all. But it’s just brilliant, being able to help and having a tiny little impact.

You say you came from a background where medicine was talked about. Do you think that has somehow seeped into you? And to your attitude, not only to the NHS but generally to caring for other people?

I’d like to say yes. But probably not. You know, it’s taken a long time for me to too involved [laugh] in this shape or form. But no I mean it’s always been in the background and so yes, we care about sick animals and things and sick people, but not to the extent of bluntly getting directly involved. All it took was a chance encounter and it opened a door and the flood gates were opened basically.

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It’s important that patient information leaflets are designed in a way that grabs peoples attention.

Age at interview 49

Gender Male

No the language wasn’t too gobbledygooky or too techy as far as I was concerned. I think, you know, some of the documents were designed, they’re written by the research doctors, so they were couched in all sorts of phrases that were medical and they had to be, because that’s what they were, but the patient information sheet was, was pretty good as it was. I think they just wanted some ideas of some different input on the layout of it to see if it grabbed your attention quickly and easily, and if it was easily understood, easily understandable by a lay person because essentially that is what I am.

I think just the basic layout sometimes. I’ve seen a before and an after version. The old fashioned one it’s just a black and white piece of, well paper with some black type on it, close type, not really set out, not spaced out, not colourful, no bullet points really. And I’ve seen the more updated alternative, which look so much more easy and you jump around it with your eyes and turn to the pages or the elements of it that grab your attention first, so you don’t have to read page, after page, after page, and get bored silly basically. You can look at something and it grabs your attention, sucks you in, keeps you interested, so I think yeah, definitely the style is crucial.

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Ben met a research nurse at a children’s party and got invited to take part in research as a healthy volunteer. That was how his involvement started.

Age at interview 49

Gender Male

It was very simple. I went, my son was invited to a birthday party. I went to the birthday party and parents chattering. One of the mums, of the birthday boy, is a research nurse. I didn’t know she was a research nurse. I knew she was a nurse. And she said, Have you got any spare time? Would I consider being involved in a particular project? And I said in principle, yes, straight away and then she sent me some bumph, all the paperwork that goes with it, and we agreed a date and time to turn up the hospital. And it was just very simple, very straightforward. Right place, right time.

And while I was there they suggested that I might be interested in becoming a recruitment officer for, getting more, or just people involved in the trials, and that opened a whole range of different avenues. And they then starting about PPI which I thought was Payment Protection Insurance. You hear about it in the newspapers and telly and things all the time, but obviously it was the alternative solution answer.

And you know, basically, they sent me pre pre a trial various documents, the Patient Analysis Information Synopsis or the Patient Information Form and one or two other bits to have a look through, pre, before they published it, to see if it made sense and if I could turn it into layman’s terms or if I, you know, what I thought of it, my comments. So that was my sort of direct involvement as a PPI lay person.

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