Malcolm
Malcolm started taking part in a medical cohort study in 2009. It has involved attending two hospital appointments ten years apart. The first time he had an electrocardiogram (ECG) and an ultrasound and the second appointment involved memory and cognitive tests. Apart from personal reports, he would appreciate getting an update about the study in general: “about what it’s being used for, how useful it’s been and just a little update, a little summary every year to the patients would be well-received”.
Malcolm is married and has one daughter. He took early retirement at age 50 due to the onset of a chronic condition and became self-employed. He continues working as a consultant in the water-engineering sector. His ethnic background is White English.
More about me...
Malcolm got a letter from his GP inviting him to take part in a new medical cohort study looking at cardiovascular health. In his late 40s, Malcolm was diagnosed with rheumatoid arthritis and taking part in the study “was a nice way of keeping tabs on how my heart is performing” as well as for altruistic reasons: “it’s both, it’s for my own benefit and for the benefit of society in general. …I’m a big believer in the big society and in volunteering whenever I can”. Malcolm discussed his taking part in the study with his wife and a friend in the village, who was also taking part in medical research.
Participating in the medical cohort has involved attending two hospital appointments ten years apart. The first time he had an electrocardiogram and an ultrasound and told that his heart health was normal. He felt the nurse doing the screening was “very thorough”, explained things in detail and showed him the video of his heart. Later, he and his GP got a letter letting him know that everything was normal, but there was not much detail in the “very general letter”.
He recently attended the second follow-up appointment, describing it as a comprehensive session. In addition to heart valve screening, he wore a heart monitor for five days, and took his blood pressure regularly and wore a Fitbit to record his level of daily activity. Participation was made easier since after five days he put everything in the envelope they gave him and took it back to the GP surgery that sent it all back to the medical research team. Moreover, he recalled that on the self-addressed envelope, there has been no name just an identification number.
In the second follow-up appointment, he also took some cognitive and memory tests. He describes the cognitive test as “quite comprehensive”. The memory test consisted of giving him a string of words that he had to repeat a few minutes or half an hour later. He was also asked to “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”. He appreciated that the doctor explained things in detail before and during the tests. He was pleased to get a detailed report about how he was doing in term of heart health, cognitive ability and memory function.
He would be happy to receive more information about the study and feels that an update “about what it’s being used for, how useful it’s been and just a little update, a little summary every year to the patients would be well-received”.
Malcolm has agreed to take part in a third follow-up session that will take place in five years’ time.
Interview conducted in 2019.
Malcolm received a letter about a study and then went to talk to a researcher with a medical background.
Malcolm received a letter about a study and then went to talk to a researcher with a medical background.
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.
Malcolm is motivated to take part in a ten year cardiovascular study to benefit his personal health and to benefit society in general.
Malcolm is motivated to take part in a ten year cardiovascular study to benefit his personal health and to benefit society in general.
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.
Malcolm had a cognitive ability test which lasted about an hour.
Malcolm had a cognitive ability test which lasted about an hour.
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.
Malcolm thinks plenty of health professionals have encountered information about him. He isn’t worried about this being the case in research too.
Malcolm thinks plenty of health professionals have encountered information about him. He isn’t worried about this being the case in research too.
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.
Malcolm is interested in science and technology and was able to ask the staff questions about the tests on his heart valves which they were always happy to answer.
Malcolm is interested in science and technology and was able to ask the staff questions about the tests on his heart valves which they were always happy to answer.
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.
The feedback Malcolm receives in a heart health study has become more detailed over time.
The feedback Malcolm receives in a heart health study has become more detailed over time.
Have you received feedback from the first time did you, did they send you?
Yeah they sent me just a...
A letter?
…a 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.
Malcolm feels it is polite to give some general feedback on the study and that a short summary every year would be well-received.
Malcolm feels it is polite to give some general feedback on the study and that a short summary every year would be well-received.
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.
Malcolm suggests giving people soundbites of information so that they become interested in the research and want to participate.
Malcolm suggests giving people soundbites of information so that they become interested in the research and want to participate.
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.