Emily – Cohort studies

Emily is part of two cohort studies (kidneys and biobanking). She has also taken part in many other types of medical research. Her participation has involved blood tests, urine tests, and having her blood pressure monitored.

Emily is part of a kidney health cohort study. Her memory of how she found the study is hazy, but she believes she may have joined through Facebook as she often joins other medical research studies this way. However, it may have also been through her GP who wrote a letter to invite her to the study. Emily has previously allowed researchers to share her contact details. She believes this may also be why she has been recruited to the kidney cohort study. Another study Emily was a part of, on Alzheimer’s, was a result of Facebook advertisements. Sometimes, Emily has joined medical research studies because of written letters or poster advertisements on notice boards.

The kidney cohort study that Emily is a part of has lasted for many years. In this study, she has routine blood tests, urine tests, and blood pressure monitored. At first, this was every 6 months and then every year. She has also been given a blood pressure monitor to use twice a day at home where she writes down the recordings. She cannot remember how long she had to test her blood pressure for. Emily has found this study interesting and, apart from the blood test, non-invasive and “very easy to do”. Her participation now involves seeing her nurse once a year, which Emily describes as convenient as she does not have to travel far. In these appointments, she has her height and weight checked and she is asked questions about how she is feeling.

Emily is also a part of a biobanking cohort study. When she joined about four or five years ago, she had her blood tested, urine tested and her height and weight measured. She joined this cohort study in particular because it “seemed like a good idea” and to contribute to medical knowledge.

Emily is motivated to take part in medical research as she believes it benefits society. The research she has taken part in has been about collecting information rather than Emily having to take or undergo any interventions, apart from the Alzheimer’s study which involved taking medication. However, this study was cancelled because of concerns over the side-effects of the drug. Emily is also motivated to take part in medical research because she can learn about her own health. In the kidney cohort study she is a part of, for example, she has received feedback about her slow kidney. She believes she would not have found this information out if it was not for her involvement in the cohort study. She is happy with this level of feedback and believes that if there was anything seriously wrong with her then the researchers would tell her.

Emily believes medical research that involves taking a trial drug can be risky. However, she described the researchers she’s met as being “very thorough about telling you about the risk” of taking part. She also believes that taking part in medical research may involve finding out information about your body that you do not want to know about and it may be a burden if you have to travel far away from your home. This is why she tries to take part in studies that are close to where she lives. She will only go to studies outside of her area if they really interest her. The message that Emily has for people who are invited to take part in cohort studies is that “if you’ve got the time to do it, it can be extremely interesting and very rewarding”.

Interview conducted in 2019.

Emily suggests online questionnaires should have the option to give feedback about the questions asked.

Age at interview 68

Gender Female

Okay so every survey should end with, "What question should we have asked but didn’t?" And every question should have, you know, confidence in the answer or even just a like and a dislike button because the dislike button you could then when you receive it, if they’ve left their email and it’s not totally confidential, you could go back to them and say, Here’s the question you disliked, what did you dislike about it Well, the question wasn’t clear, and the options didn’t match anything in my lifestyle so my confidence in it was zero, so I just thought you ought to kno.

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Emily was issued with a blood pressure monitor connected to a mobile phone. She took her blood pressure three times a day and the results were sent back to the hospital.

Age at interview 68

Gender Female

I think they explained that it would be a number of blood tests, a number of urine tests, spaced out over six months and then sort of every 12 months thereafter. So oh yeah and doing blood pressure as well and a couple of times, or at least once anyway they give a blood pressure monitor to have here at home and to do myself which was quite interesting. So it all seemed totally, you know, apart from the blood test non-invasive and very easy to do.

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Emily finds it very convenient that the researchers come to her local GP surgery to do the follow-ups.

Age at interview 68

Gender Female

Well we go to see them in the GP’s surgery. it’s definitely down to annual now, I can’t remember how frequent it was before, you’d have to ask them that.

Okay so you don’t, you can’t remember.

It might have been every six months, it might have been every three months, it might have been more frequent, but it didn’t matter, it was all very convenient.

It was convenient for you?

Yes because it was here in the village.

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Emily completed a questionnaire over the phone for one study and it was difficult remembering all the tick box options without seeing them written down.

Age at interview 68

Gender Female

Are they presented in a kind of easy to fill in kind of surveys?

Yes except the one, they did some telephone interviews from the, on the Alzheimer’s one and basically they were saying, do you have sort of like they say suicidal thoughts and matter and they just say, your choices are, you know, never, occasionally de de de de [illustrates ticking of a list] and by the time you’ve got to the end of the list I’ve forgotten what the list was. So I said, Hold on a second, let me just write down that list. Okay now ask your question and so it was actually quite difficult to do because I couldn’t, I’m much better with visual things. I couldn’t keep them in my head.

So this was a telephone interview?

Yeah telephone interview that was basically her filling in a multiple-choice question, but I couldn’t see what the answers were. It would have been much better if she had sent me, you know, Now turn to card four you know, what I mean. Here are your answers, now let me ask the question do you know what I mean?

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For Emily, the interesting part of the information leaflet is about the purpose of the study. The other paperwork is all the standard stuff.

Age at interview 68

Gender Female

Yeah the information about the study’s interesting, the rest of the bumf you have to fill in is all the standard stuff that says usually that we will anonymise and then I’m usually skipping to see what feedback they’ll give me and how long the study will go on and whether there’s any drugs involved or anything like that.

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Emily has taken part in a number of medical studies. She thinks the specifics of the study should be clearer in the written leaflets, and then she could skim the more generic material. She also thinks the documents need to be carefully proofread.

Age at interview 68

Gender Female

Yes I would like to see the things that are unique to the trial upfront or in a different font or somewhere clear and then the more generic stuff like yes we’ll anonymise it, yes we want consent to it, you know.

Okay.

The things that may differentiate the study from other people, the aims of the study, your involvement, your feedback
Okay.

You know, rather than
Okay.

ading through lots of stuff thinking there’ll be something interesting here. But, but they wanted to make sure I’d read it so one of the ones I took back to Alzheimer’s I found there were typos, I’m fed up of this I got out a red pen and every time I marked a typo and he said now Have you read this?’ I said Yes I have read all of it and the proof of it here is I have turned down just about every other page because the English is bad and it hinders the understanding of it’, and he went Oh thank you’ he said Unfortunately it’s under document control and I won’t be able to change it until the next time we revise the version’, and he was really frustrated by that.

It was clear that, you know, while we were expected to take the time to read it in detail they had never done that or the person who had done it hadn’t done it properly.

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Emily wants to take part in many research studies but says it is difficult finding out what is available. She suggests producing a website where people can search for available studies depending on their specific criteria.

Age at interview 68

Gender Female

Yeah well so some of them like the psychologists at the [Hospital] you know, do this paper stuff with the daily info circulation which is quite interesting and I quite often see those but it’s not consistent. If you go on websites you’ll find you’re in one for the whole world so then you’ve gotta try and focus it down and really I prefer things to be in [place name] and so it’s quite difficult, and then and quite often they’ll say, you know, aged 25-55 or something like that. So what they really need is a website where you can say this is my age, this is my gender, this is my location, show me everything that fits with those criteria but they don’t have that.

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