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.

Mr S thinks it is good if researchers on cohort studies can speak other languages. Otherwise he thinks there might be miscommunication and misunderstanding when answering questionnaires.

Age at interview 35

Gender Male

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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.

Lucy has been in a study since birth. Her mum made the appointments with the researchers and this continued as she got older.

Age at interview 30

Gender Female

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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.

Age at interview 68

Gender Male

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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.

Age at interview 75

Gender Male

Age at diagnosis 48

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You can find out more about people’s experiences of receiving feedback on their personal health from tests in the study here.