Cohort Studies
How do research teams communicate about medical tests and study activities?
Most people we spoke to thought that the research teams had been very professional when explaining study activities. This included when and where activities were to take place, and what was going to happen. Sometimes people were contacted in the post or over the phone. Keith recalls that, for both cohort studies he took part in, the “details [were] made perfectly clear where to go at what time, who I’ll be meeting and the nature of the research on that day”. Anthony said, “They always explained exactly what it was for and I was never, never left high and dry, just thinking, ‘Well what was that about?’” Barbara said the study team always let her know that they were sending out a questionnaire which usually came with the birthday card, and “it never comes unannounced”.
But some people felt that the study activities could have been better explained. Often this was because the participant had joined the study as a baby when their parents enrolled them, and they felt it hadn’t been explained to them since. This was Derek’s experience.
Sometimes the researchers had used very medical language, which made it difficult to understand. Malcolm remembers getting a report that was full of “jargon”. Those for whom English is not their first language said it could be a barrier to taking part and understanding study activities. Paperwork, like leaflets about the study and questionnaires, were not always available in other languages. Mr S thought it was good that one of the research nurses he and his wife saw spoke Urdu.
Margaret Ann is part of a birth cohort study. When she was an adult, she once had a visit from a research nurse who took some measurements. The research nurse explained some topics of interest in the study, like diet.
Margaret Ann is part of a birth cohort study. When she was an adult, she once had a visit from a research nurse who took some measurements. The research nurse explained some topics of interest in the study, like diet.
Have they explained to you on in a letter or when this lady came to take the measurements?
She just says, “Oh we’re just, it’s something they started in the ‘50s,” and as far as I remember she was saying it was, like, diet and education and that was all really and medical side of it. How, well I just thought it was like our diet, what we ate in the ‘50s. The diet we eat now is nothing like what we ate, how we survived the ’50s I don’t know because we cooked in lard and everything was potatoes and we maybe had potatoes twice a day and no wonder I was fat, but nobody else was.
Oh okay, so the diet.
Yeah, that’s really what we thought, just tracking things like that.
Speaking to the researchers in person or over the phone was often an opportunity to ask questions. Alan Y said the researchers always checked if he understood and “encouraged” him to ask questions if he had any.
Not everyone had met or spoken to a researcher from their cohort study. Jade, who took part in a twins study from birth, couldn’t remember seeing or talking to a researcher but she thinks her parents might have. Lucy had met researchers when taking part in study activities, but most of the planning of study visits with them had been made through her mum.
For those who saw researchers to complete various tests and activities for the study, they often thought staff were competent and professional. Alan Y recalled that the researchers he saw were organised and had access to all his records. People didn’t always see the same researcher each time, and they might see multiple researchers at a study visit when completing different study activities.
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”.
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”.
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 ‘o'clock. 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.
Often people said they were able to chat with the team when having medical tests and check-ups. Keith said, “It’s all very friendly and easy and not at all threatening”. Roland explained, “It’s not all seriousness and having a pin stuck in you. We have a bit of a laugh”. Douglas recalled, “As I got further into it, we chatted more about some things on the studies but actually ended up being more social”. Some people had backgrounds in medicine, science or history, which added to their sense of interest when talking with the researchers.
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.
Ian liked that the study team explained why they were doing certain tests which helped him to understand and made it interesting.
Ian liked that the study team explained why they were doing certain tests which helped him to understand and made it interesting.
When you go in the MRI - you know, it’s not everyone’s favourite thing to go in the tunnel - absolutely no issues. They talk to you the whole time, make you feel comfortable, explain to you what the tests are about. That is so important that you understand why they’re doing things. They’re not, you know, you’re not just there, “Well, we’re going to do this, but we’re not going to tell you why”. It’s the complete opposite. “We’re going to do this test because we want to find out the relationship between your sight and your brain” or “We’re going to do this test because we want to test why the right side of the brain is not talking to the left side of the brain”, or “why there are, why MND [motor neurone disease] crosses over the right and the left”. All that sort of thing was explained to me. It was-, it was very, very interesting.
You can find out more about people’s experiences of receiving feedback on their personal health from tests in the study here.
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