Brian – Cohort studies

Brian is participating in a birth cohort study and a biobanking study. He has received regular feedback from the birth cohort study over the years and recently he has been consulted on the next stage of the research which is focusing on ageing.

Brian is participating in a birth cohort study and a biobanking study and both have been positive experiences. He has taken part in the birth cohort study for over 70 years. At primary school, Brian remembers occasionally being taken out of class to have medicals and IQ tests. He didn’t mind doing these tests at the time; it was just part of his life, and he felt special and proud to be part of the research. Brian would have liked to have known how well he did in the tests, but he did not receive individual feedback. He is unsure if he could still have access to these results now.

Over the years, Brian has filled in questionnaires and he thinks there may have been other tests, but he cannot remember. More recently the focus of the research has been on ageing and members of the research team have visited him at home to conduct various tests, such as, memory and physical ability. He did not find these tests difficult, nor did it take up too much time.

His most recent involvement has been spending a day with the research team where together with several other research participants he was consulted on his views of the next stage of the research which may involve blood tests and MRI scans. Brian thought it was good to be involved in the planning stages because it helped to identify any potential problems that might occur before the next stage of the research started.

Brian assumes consent for the study was originally given by his parents and he thinks he may have filled in more consent forms as the years went by, but he has never considered leaving the study. He trusts the organisations running the research and so he feels his information is secure. The reputation of the organisation running the research is very important in Brian’s decision to take part in any medical research. He would not be concerned about taking part in research run by “a bona fide, genuine, probably a public authority, who you can trust and to do the right thing”. Brian felt he could contact the research team easily if he needed to.

For many years, Brian has received a birthday card from the research team which included a brief update of what has taken place that year which he felt was sufficient feedback. More recently, Brian attended a 65th and a 70th birthday celebration for all the research participants where he was able to meet the researchers and hear about the results of the research. He understands that there are costs of feeding back information and feels that the research team for the birth cohort study got the level of feedback just right.

Brian is also part of a biobanking study. To join the study, he initially attended a day event in a city near his home where he had tests and health information questions to answer. Since then he fills in questionnaire surveys online.

Brian says the reason he has taken part in both cohort studies is to benefit the next generation. He sees no benefits to himself but after seeing the positive outputs from the birth cohort study he was motivated to take part in other cohort studies because he believed it would also produce something worthwhile.

Interview conducted in 2019.

Brian is in a birth cohort study. He talks about how the emphasis of questions has evolved over time, and the focus is now on ageing.

Age at interview 73

Gender Male

I’m not sure that it’s really changed I suppose that the, what they’re researching is changing, you know, from being I think it started with just sort of health being a baby, how there was concern that a lot of children were dying, I think that’s how this research started. But over the years research has changed significantly, it’s to the point now where it’s all about ageing and how we’re coping with all the problems that arise as you get older but, it’s changed right through, each time there’s a different emphasis on, on what’s on what they’re looking at, so. So that’s the main thing and so I suppose the research that they do and the questions they ask are sort of related to that research so.

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Brian thinks it is good to take part in research with trusted institutions and organisations.

Age at interview 73

Gender Male

I would encourage it as long as it is a bona fide genuine- probably a public authority who you can trust – and to do the right thing. I, you know, there are so many companies out there looking for information about everything now, you know, surveys back for this and surveys back for that not recommended at all but if it’s a genuine bona fide company looking for long term solutions to problems then yeah I would encourage it.

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Brian feels confident that the researchers protect his personal information. He is reassured by studies being run by well-known organisations.

Age at interview 73

Gender Male

I honestly, I mean it’s meant to be safe and secure but I really don’t know that. I’ve trusted them; they are one of the, you know, foremost medical research centres in the world. If they can’t get it right, who can, so I think if it was probably somebody less known I’d be a little bit worried about it but I’m not worried about them. I, you know, I’m sure I can trust them to do the right thing.

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In a study he is part of, Brian says the other researchers using the data must report their findings back to the original study team.

Age at interview 73

Gender Male

Yeah I think whatever information they’ve sent out on, you know, about research, what the info, the data the raw data…

Yeah.

hen the condition is that they get the information back that the research that they’ve found so it goes back to the [biobanking study] and again they share, it’s all sharing.

Sharing, right.

So you can’t take the information away and use it and hide it and keep the research, you have to bring it back to the [biobanking study]. So it’s a massive sharing, a bit like presumably what you’re doing here really…

Right.

here it’s shared around the world.

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Brian took part in an advisory group to gather people’s thoughts on future plans for the cohort study.

Age at interview 73

Gender Male

And I have to say that the team that’s been involved they’ve been, they’re really good, you know. Even now our last one I, I’ve just been up about 18 months ago with, they’re doing another big research project and they, they invited several of us to come and see the tests that they’re gonna do and the reactions that, you know, so it was actually just a lot of preparation work to get the survey right. So we’ve all been up there and seen what they’re gonna do to us [laughter] and get, gauge our reaction before they actually implement research.

Right, right.

So they’re actually doing that now…

Sort of consulting you?

onsulting us before they start the research

Yes, wow.

Which is pretty, pretty good I think and so it will happen, you know, because we’re having MRI scans and we’re having blood tests and head scans and goodness knows what, this is what’s gonna happen next. And but they’re actually asking about, you know, how we feel about it before they implement the research.

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Brian can’t remember a re-consenting process in his birth cohort study and doesn’t think it was particularly necessary because he was involved already and never thought of not doing it.

Age at interview 73

Gender Male

And, right just thinking about the consenting process which we’re so focussed on nowadays. Obviously you didn’t get to consent?

No [laughter] not at all I just found, I arrived [laughter] obviously my parents did as far as I remember they were very happy to help out so I think it was totally random, you know, they just, there were six babies in the bed and in the ward and they just choose three of them, you know, I think it was half, that’s how they did it, it was pretty simple. I suppose if you didn’t want to do it then you, you know, they found somebody else to do it but that’s what they were looking for about half of the people, those children born at that time.

Yeah. And when you became an adult yourself
Yeah.

as there a sort of re-consenting process?

I can’t remember one, I can’t remember one but there probably was but I probably didn’t realise, you know, they were just probably on the form that, you know, that you are happy to give this information, you know, and I always was. I never, I never thought of not doing it to be honest.

Yes.

It seems a good, good thing to do, so yeah, so I didn’t have to worry about consenting, I was involved already.

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A researcher came to Brian’s house for an hour to carry out physical and memory tests for the birth cohort study. One time, he had to stand on one leg and stand up on a chair.

Age at interview 73

Gender Male

But there were papers, there were papers, that you had to read and fill up and I’m sure there were more tests that I can’t remember. And I know in the latter years, you know, I have had people come to the house and had medicals and memory tests was one of the things. Now of course they talk about memory and physical, you know, standing up on chairs and sitting down, all these things. Standing on one, I think you’re, one interviewer mention standing on one leg but that’s another one, especially with your eyes closed which I find is almost impossible now to stand on one leg with your eyes closed [laughter] but there we are, that’s getting old for you.

It sounds like it’s sort of quite fun, not too arduous?

Well it’s perfectly alright and it’s not arduous at all, no it’s not arduous at all. It only takes an hour or so all in, in the scheme of things, that’s nothing is it? [Laughs]

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