The main point is to explain that benefits I think to both of them, to them and to-, to the research that they’ll be contributing to. Or to the programme, the project that they’ll be contributing to but also benefits to them. I think- I think that’s the only way you can get people to participate. I think you can’t force people, you just have to raise their interest level, so I think you- you can pick out issues that would be informative to them from the- from the tests that you’re doing from the project that you’re doing and say, Would you like this to happen, would you like to take part in this because- You know, fixate on something that maybe would interest them rather than turn them off. So maybe a lot of information is good to certain people but small snippets of information is good for others, you know, sound bites. I think that’s the only way you can get people interested is by just giving them more information.

Have you received feedback from the first time did you, did they send you?

Yeah they sent me just a…

A letter?

summary of the data and it went to the GP as well the first time yes it was just, just confirming that my heart was normal and thanking me for taking part in the tests. It was very useful to have that information, that sort of thing. But not a great detail about the reasons for the test and the reasons for the, or the results, just the fact that everything was normal.

Okay, would you have liked more reasons why they were doing it and…?

Yes very much so, yes I think that’s a good point and one that was obviously was-, was evident in the latest, the latest test because they sent me much more information and they sent me the detail of the, of the results which, some of which I understood some of which I didn’t but I’m sure the doctor would have-, would have called me if there was anything to be concerned about. I think their only concern was there was, all of the valves were normal except the one atrium valve, atrium valve was slightly distended but, but nothing, nothing to worry about.

Yeah if you’re volunteering yourself and your information for a study, you know, it’s only, it’s only sort of, well it’s nice to be able to be informed about it. it’s polite, isn’t it, to give some feedback other than just results on your own physical test.

Just little updates not in-depth just a few lines, a few pages of report maybe or a page of a report, an update, a few bullet points. it’s quite easy to produce a report in an easier understanding format that anybody can understand.

And one of the, some of the questions at the beginning of the test was- it was quite a comprehensive test lasted about an hour. Some of the, some of the questions were, a couple of odd ones, to test whether I could tell the difference between different animals or repeat different words and remember them. So it was very much, very much linked to see what my level of cognitive ability was at the moment and it was pretty high I have to tell you without being arrogant, it was very high. It was in the top 95% for my age so and I do crosswords every day so I, I like, I try to keep myself my cognitive ability, I try to keep it up.

Yeah, memory in terms of giving me a, a string of words which I can still remember and then asking me to repeat them a few minutes or half an hour later, so sort of words like face, purple, lily, church, velvet.

Okay.

You know, a sequence of words which I had to then repeat back. And they asked me to repeat back then and also half an hour later they asked me to sort of, to take say a number, 94 and subtract eight from it each time until I got back down as far as I could, so that was like a mental arithmetic test.

Well the only risk would be data, the escape of data but I don’t see any problem becauseI’m not really too worried about people knowing what my medical condition is. Everybody who treats me and I’ve had sort of 25/30 years of hospital treatment and hospital visits and surgery and all the time people have data on me and they have sort of take, take biopsies and they have, still have bits of my bits of my body and so I find it all, I’m quite unexercised about it so I don’t mind. So it wouldn’t worry me too much about the risk of any of the information being broadcast because it’s, although it’s private, I don’t have anything to hide. I don’t have any worries about people knowing my detail of my physical state and the state of my heart or the state of my lungs, so.

Did you feel that you were able to ask questions?

Yes, yes well I asked questions anyway, whether they felt comfortable in answering them is a different matter, but I got the impression that they, they were quite interested in the fact that I was interested. So I wanted to ask about the study and about the various technologies that they’re using and they were quite happy to answer those. So it was a two way-, two way interest really.

I think it depends on the person and how much they want to know. The person, the person who’s undergoing the tests and how much they want to know about the, the science and the medical history and medical information. Not everybody’s interested and I was particularly interested so, I’m an engineer so I’m just interested in technology and the world in general and everything I can learn, so. I was quite interested to know about the detail, so I guess some people may not want that much detail or may not be interested or may not be given it. So I think it all very much depends on the individual patient or individual research person who’s doing it.

Oh well, well really for my own benefit to reassure me that my heart is still sound. Although, although I have a lot of hospitalisation and a lot of visits to the hospitals, it’s mostly joints and it’s mostly it’s mostly physical things rather than, you know sort of joints rather than hearts or vascular tests, so I’m always pleased to have, to know that I’m ticking along okay. And I had, I’ve had recent high blood pressure problems so I’m taking medication for that now so I’m more concerned I suppose as I get older of my own health and my own deteriorating health if it is deteriorating because I want to know about that. But it’s also a bit of altruism, I’m also interested in helping teams like you and teams like medics and doing research to give my views and use myself and samples or whatever as good practice for them to do help them research.

Okay, so it’s to…

it’s both, it’s for my own benefit and for the benefit of society in general.

Yes, it was a lot of detail so I haven’t retained, I haven’t retained all of it or very much of it in fact, a lot of detail about how the links work and how the heart works and how the links between heart valves and, and what happens in the body with- with the heart to cause maybe dementia or to maybe bring on dementia. So yes it was very thoroughly explained to me and I understood it at the time.

Was it explained on, on a leaflet or by, by research nurse or doctor?

By the consultant who was doing it, I presume he was a consultant he didn’t actually tell me what his job was but I think he’d been involved in, in, in the hospital cardio, cardiac department of the hospital. He was part of, I don’t know if he was a surgeon or if he was a consultant or if he’s a GP but he’s certainly a, I think he was a doctor.