Alan Z – Cohort studies

Alan Z is part of a 5-year renal (kidney) cohort study. His participation has included blood tests and answering questions at his GP surgery. He is motivated to take part in the study to help society and improve medical knowledge.

Alan Z is part of a 5-year renal cohort study which aims to understand how common chronic kidney disease is in the general population. He was invited to take part in this study through his GP. Alan Z has previously taken part in other medical studies and he thinks this is why he was invited to participate in the study. As part of his participation in the renal study, he met with a researcher at his local GP surgery who took his blood pressure and asked him medical questions about his weight, height and lifestyle. Alan Z also had several samples of blood taken and was told, “I’ll see you next year.” He was invited to the follow-up appointment a year later by phone. At this appointment, the same tests and questions were repeated. The information that the researchers gather as part of this study is sent to Alan Z’s GP.

When Alan Z was invited to take part in the cohort study, he received an information pack. He had no concerns about his participation. He was motivated to join the study to help people in the UK and across the world, and he describes his participation as “carrying on with the mission”. Alan Z also likes participating as it is like “a free health check”. Alan Z has never thought about stopping his participation and does not see any reason why someone would. He is happy to travel to his annual cohort study appointment as his GP surgery is only a few miles away.

Alan Z also took part in another medical research study about ten years ago. This was about people who have prostate problems that could have resulted from the local water supply. This study was brought to his attention by his GP. Alan Z has received no feedback from either the prostate medical study or the renal study, except from his GP. He thinks, though, that if the study researchers had found anything serious he would have been told. Alan Z does not mind that he has not received any information about his participation because he is aware of the cost of sending information through the post.

While Alan Z is generally happy about participating in medical research, he would not like to take part in a study which involved any minor operations. However, if Alan Z agreed with the study information and purpose he might consider participating. His message to people who are invited to take part in a cohort study is to do it “if they feel that want to help society”. His message to the professionals who run cohort studies is that he appreciates their role in the research process.

Interview conducted in 2019.

Alan Z believes a lot of people will benefit from cohort study research, and he and others appreciate the team’s work.

Age at interview 86

Gender Male

Well, I think you’re doing, you know, really brilliant job and I’m sure lots and lots of people would benefit from it and we all appreciate your research and endeavours and the outcome of your research, yeah. I think it’s, you know, as I say, a jolly good thing and I can’t see anybody’s who’s open minded, not volunteering to do it. it’s like, you know, volunteering to give blood etc. it’s just one of these things you feel you want to do.

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Alan Z sees cohort studies as having an important role in understanding health in relation to lifestyle and diet.

Age at interview 86

Gender Male

Well because throughout my life I’ve obviously heard or witnessed many sort of medical advances which even my own family have benefited from and obviously it’s all for the good of, say, everyone, you know, not just in the UK but throughout the world, these wonderful breakthroughs in medical technology are achieved and a lot of it’s done by, obviously lots and lots of painful long studies of humans and guinea pigs shall we say, and obviously they can see a pattern. I mean, I can’t think of an example but I have read where due to all, this intensive research, I suppose, like, in ongoing heart-related diseases and cancer diseases, not only is it just working in laboratories but a lot of it is done by this type of study where they get the demographics of a people or a race of people even and find out what makes them tick, something comes up they’re taking a certain type of lifestyle. Like, they hear quite often Mediterranean lifestyle where people are on a very high diet of olive oil, you know, and fruit based, vegetable based and drink probably a lot of wine, [laughs] but that’s part of it, they don’t have a highly intensive sort of fat based diet, like we in the UK do, and they seem to avoid a lot of heart-related issues.

But yeah, so, obviously, looking at all those issues they can determine certain traits and then they can narrow down onto it and, I suppose, take the study forward through doing various other measures, you know, research in laboratories etc.

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Alan Z says medical advances are achieved through identifying patterns in research and so he wants to contribute and carry on with the mission.

Age at interview 86

Gender Male

So, obviously they want to see participant’s sort of progress over time, measure what’s going on; whether it’s changed, whether it’s improved, got worse or whatever. I assume that’s going to be part of it because that’s screening several, several probably dozens, if not hundreds of people, in which presumably they’ll arrive at some helpful conclusion as to kidney functions and what, you know, what can be done to help those who are probably less fortunate. I assume that’s the operation or the outcome, yeah.

Well because throughout my life I’ve obviously heard or witnessed, you know, many sort of medical advances which even then there’s my own family have benefited from and obviously it’s all for the good of, say, everyone, you know, not just in the UK but throughout the world, these wonderful breakthroughs in medical technology are achieved and a lot of it’s done by, obviously lots and lots of painful long studies of humans and guinea pigs shall we say, and obviously they can see a pattern.

Like I say, I think it’s important that these studies are carried out not necessarily for my family but for people living in the UK etc. or across the world. So, yeah, I’ve got no concerns about it, so yeah, I carried on with the mission as it were.

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Alan Z had an appointment every year for three years where he went to his doctor’s surgery for tests that lasted about half an hour.

Age at interview 86

Gender Male

Yes, so obviously a date was arranged and details sent to me and I attended the GP surgery in [village] in [name of GP] surgery and then I met a, a person there from the renal study group who took all my medical details including weight, blood pressure. Then took several samples of my blood and said that I’ll see you next year [laughs].And so it all went very well.

Then the second year we had a repeat performance; I was contacted at home on the phone and asked, you know, when I would be able to take part in the second part of the programme and we arranged a date and this was done again in [name of GP] with a lady doctor and exactly the same format and also took the samples away for analysation. The outcome of that they sent the information history to my GP, so my next Wellman interview which is every year, it said they’ve got the results and they showed me on the screening one thing and another and everything was sort of very, very good and then laterally, this year, had the third session on research programme; exactly the same procedure. Obviously, I don’t know the outcome of that but I’m sure if there was anything untoward, I’d hear further, so, yeah, it was fairly straight forward.

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Alan Z is part of a five year renal (kidney) study. He doesn’t feel this is too long a commitment, and that it is a good length of time for the researchers to gather data.

Age at interview 86

Gender Male

Yeah well, I had to do it over a certain number of years because to get a comparison of how you’re functioning over a period of time. I suppose two years would not be enough; three years would hardly be very much about it. I suppose five years, you’ve got a broader landscape to see how the actual performance of the kidneys is actually bearing up.

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