Keith – Cohort studies

Keith is part of two cohort studies. He joined these studies through his GP. He is keen to continue his participation because he finds them interesting and hopes it will improve medical practice. The only concern he has is in regard to data use.

Keith is part of two cohort studies. He has been keen to take part in these studies because of the potential benefits to society and medical benefits that can come out of providing information over a long term. He is also interested in the outcome of these studies because of his background in education. The only concern he has for taking part in cohort studies is having his data misused, especially because of recent breaches that have been highlighted on the news. However, he trusts the organisations that are running the cohort studies and he has been reassured by researchers that his data will be used and stored appropriately.

Keith was first told about the two cohort studies by his GP and then through a letter in the post. He believes he was invited to join the kidney cohort study in particular because he has only one working kidney. Keith has been participating in this study for 4 years. Initially, he took part in an interview, which lasted about an hour. The interview involved discussing consent and use of data, and he was then asked about how his life was affected by having only one working kidney. Keith then had a series of tests including blood tests, urine tests, and his pulse-rate monitored. He gave permission for the researchers to have access to his medical records. Keith meets with the researchers every 2 years and they ask him a series of questions about his wellbeing and how he is managing with one kidney. He says it feels more like a coffee and a chat and “it’s all very easy, friendly and not at all threatening”. The information he has received back from this study he describes as “perfectly adequate”.

When he joined a biobanking cohort, Keith had an appointment that lasted about 15 or 20 minutes where he was asked questions related to his health, the medication he is currently using, the effects that these medications have on his lifestyle, his family history and his lifestyle. After this, he had no contact with the researchers for 2 or 3 years but then was invited to a day where he had 4 or 5 hours of tests including a memory and reasoning test, a full-body scan, and an ultrasound on his arteries in the neck. Keith thought the testing was “extraordinarily comprehensive” and he was impressed by the professionalism of the people performing the tests as well as the information he was provided with. He was told that if anything was wrong with him, the researchers would contact his GP. Even though Keith received no feedback from his GP, he would have liked to have known how his scan looked.

Based on Keith’s participation in cohort studies, he does not think anything needs to be improved in future studies. He has always been given lots of information about his participation and feels comfortable that, if he had concerns, he would ask. He encourages anybody to take part in cohort studies because “it’s a fascinating exercise” where your information could improve medical practice. Keith would also like to thank the researchers who are involved in cohort studies because they have always treated him in a friendly way.

Interview conducted in 2019.

Keith completed some cognitive tests about thinking, reasoning and memory. Sometimes he was given feedback on how he did, but other times he wasn’t told.

Age at interview 68

Gender Male

Well I went blank on the reasoning test that, all the other ones I managed quite well. There was some I suppose understanding the meaning of words which I think I didn’t, well I think I didn’t have any problems with it because they didn’t tell us whether we were right or wrong which was a bit disappointing anyway but there was one with reasoning, moving counters which had a blank there for a while and I sort of picked up again. You’re under pressure with time as well I think for certain, so it was quite testing, it was quite testing and I was very glad I was in a booth with nobody watching [laughter].

But they, they didn’t give you a kind of overall kind of
No, no.

core or anything like?

Some of them did, some of them did. There were scores at the end there so you could see how well you’d done or not.

Okay.

But some, some they didn’t so. I think it tied in with the fact that they were going to, you know, unless there was any information that was critical as it were, not critical but serious they weren’t going to give that information it was just going on to the, and that was made perfectly clear so, you know, no complaints about that.

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Keith encourages others to take part in cohort studies. He finds the research interesting as well as hopefully improving knowledge and practice.

Age at interview 68

Gender Male

Well, I’d encourage anybody who was asked to take part in this sort of research to take part. Firstly because it’s interesting in its own right, it’s a fascinating exercise to- to be a part of this long-term research but also the actual information coming from the research would be put to good use and improving practice and that’s got to be good really, so I strongly encourage anybody to take part.

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Keith would like to say thank you to the research teams of both cohort studies he took part in. His experience has been very positive.

Age at interview 68

Gender Male

I don’t think there was anything I would say to improve practice but what I would say is thank you because they’ve always dealt with me with the utmost civility and friendliness and, and information has been good and given and if they continue in that way as they have with me then it can only be, you know, a contributing factor to the success of the research. No, I’m very positive about the whole experience in both cases.

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Keith had a series of tests when he first started a study. He didn’t have anything for two years and then he was called again for an absolutely massive day of tests.

Age at interview 68

Gender Male

Yeah, yeah that’s right I replied saying I wish to volunteer and take part in terms of [biobanking study] I was called to [city venue]. There was a centre there had a very, very thorough-, thorough medical examination, a whole range of, a whole range of different tests for different things.

Okay.

The normal things like blood pressure and heart rate but wider than that as well and that lasted about two or three hours in the first instance. Then after that received just from [biobanking study], received newsletters along with everybody else who’s taking part in research and that was very interesting, absolutely fascinating actually to see the way the [biobanking study] is gathering information and how the information is being used. And I didn’t hear anything for I suppose two or three years I should think and then was asked to go to [city] to their centre there and had an absolutely massive [laughter] massive day of tests, they tested absolutely everything including mental faculties as well, there was different tests on computers.

On memory?

Memory that’s right and reasoning power but, but also on top of that scanned twice in the one day and ultrasound on arteries in the neck but it was extraordinarily comprehensiv.

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Keith was impressed with the professionalism of the people taking the tests for a cohort study and it was interesting to see research in action.

Age at interview 68

Gender Male

it’s just interesting to see research in action anyway and it-, the staff are extraordinary professional and they- they didn’t-, there weren’t any sharp intakes of breath, you know, if it was wrong or, or good or whatever, totally professional and it was just one long stream, from turning up reading through all the information and all the- and signing all the forms, giving my permission, straight through with different tests one after the other without any breaks at all which was good. Well apart from an odd cup of coffee or whatever and then going on until about 1 oclock. So it was a good four or five hours of solid.

Yeah it was all perfectly clear. As I say, I was impressed with the professionalism of the- of the people undertaking the tests. They- they made it perfectly clear from the start, told me just what to do and explained just what was going to happen, no surprises. No surprises and no problems.

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Keith received a letter about a renal (kidney) study via his GP. He met with the researcher to discuss it and to sign some forms.

Age at interview 68

Gender Male

I did via the GP asking if I wanted to volunteer. I did volunteer and that’s a smaller-scale operation than the [biobanking study] and initially I went for a meeting with a researcher who was doing the research on [renal cohort study], lasted about an hour, again lots of information and lots of forms to sign giving my permission for the use of the data and then I suppose the interview took an hour and had a series of tests, blood tests, urine tests heart, heartbeat pulse rate and a series of questions, quite a lot of questions about how I was affected by only having one working kidney.

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There wasn’t a specific type of misuse that Keith thought could happen with cohort study data, but it was an uneasy fear at the back of my mind.

Age at interview 68

Gender Male

I suppose the only thing, the only thing that could possibly occur is that the data could be misused, it could be tapped into somehow and misused and I think we’re all a bit wary now about the use of data and especially with problems with Facebook and different

Okay.

ifferent data breaches that have happened. But I’m not quite sure what to be perfectly honest, it’s just an uneasy thought of lack of, an uneasy fear at the back of my mind really.

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