Jess – Cohort studies

Jess is part of a birth cohort study. She remembers answering questionnaires during primary school. She thinks that the researchers have not needed to contact her but if they needed to follow up with her, she would respond.

Jess is involved in a birth cohort study which she remembers joining while she was in primary school. While she does not remember her exact age when she joined, she can remember talking to her parents about her involvement and filling in survey questionnaires about her parent’s occupation. She also can remember doing a reading test and telling her mother that she was a good reader. As she was a young child at the time of her recruitment, her memories are quite vague about what the rest of her participation involved.

She has not received any communication since primary school and presumes the team were looking for something specific and did not need further information from her. She is aware that the study is ongoing because two of her friends who are also participating in the birth cohort study do receive updates from the researchers. Jess does not mind that she has not been contacted but says it would be interesting to receive a newsletter about the study. If she were asked to follow up something specifically from her answers to the original survey, she would be happy to participate. She thinks approaching people personally is the best way to tell participants about any developments in the study.

Jess recognises that research teams try to protect data safely but believes that storing data is “never really 100% foolproof”. She is happy that she becomes an identifying number when her data is used. However, she believes that participants should be aware that data breaches can happen as a result of data storing.

Jess’s motivation for continuing to take part in medical cohort studies relates to her own experiences of illness. She believes medical cohort studies are important to inform the development of new treatments and enable professionals and researchers to give people better information about how to manage their illnesses. The message that Jess has for others that are invited to take part in cohort studies relates to this idea of helping others. As Jess puts it, “It’s just useful to do.”

Interview conducted in 2019.

Jess hasn’t heard anything from the birth cohort study team since primary school, but she doesn’t mind, and she assumes they didn’t need to follow her up.

Age at interview 67

Gender Female

Yeah, it’s like I was part of it and myself and lots of others have been lost in the survey. It didn’t bother me because as I said, I didn’t think they thought, I think they, I think I must have thought that they were looking for something specific and I didn’t, the questions that I, how I got on in the first and the original survey, I didn’t come into that criteria, so they didn’t need to follow me up. That’s what I thought.

I’ve changed my name. I’ve moved address. I’ve done blah, blah, blah, so I don’t know how they could contact me and I don’t know when, as I said, I think that so many of my friends weren’t contacted, you know, they and I didn’t understand why, wasn’t important to me to find out why. I could have, suppose I could have said to my friend in [city, who was contacted more recently about the study], Oh, what happened? Who did you get this information from? How did you know about it I could have followed it up that way, but I didn’t even think it was important to do that.

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Jess remembers a question from the survey she filled in when she was a child. She didn’t expect the study to still be following her up so many decades later.

Age at interview 67

Gender Female

Well, it’s not, it’s just useful to do and I think if I’d thought, I wouldn’t have thought 50 years ago, and my mum and dad probably didn’t even think there would be a follow up. It would just be information that goes into not a computer then, but some sort of thing that would be followed up that, so a percentage of so and so had one brother or five brothers or whatever and they were, and the conditions they were living in and they, I think there was a question in the survey about income and my dad was self-employed and I don’t know, I can’t remember the figure that he put in, but I remember thinking, Gee, that’s a lot of money that you’re, that you’re having. So I thought, you know, when I think about it now, they were probably looking at our conditions, our income, our social status, our what might happen, what would happen to us in the future, but I didn’t know that, I didn’t expect or ever think that anything would come of it.

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