Ronald – Cohort studies

Ronald was recruited to a birth cohort study with his twin brother during primary school. He is unaware of the progress of the study. He has not been asked to complete questionnaires but presumes the team has access to his medical records.

Ronald is part of a birth cohort study and was recruited during primary school with his twin brother. He remembers being asked about his general health and having his weight and height taken. Other than that, he has little to no memory of taking part in the study. He has not been asked any questions since primary school but presumes the research team are looking at his medical records. The only way he is aware of his ongoing participation is through annual birthday cards that he gets from the research team. He is unaware of the progress of the study and how his data is being used. He is interested to receive feedback and to learn about his contributions, and he would be happy to participate more in the study. Despite the lack of feedback, Ronald has always thought it was a good study and he is interested to continue participating in the birth cohort study as he understands the team has good intentions.

The general attitude that Ronald has towards medical research is that it’s excellen and he believes it is the only way that knowledge can progress. This attitude, as well as his diagnosis with multiple sclerosis (MS), has motivated him to take part in medical trials. He is open to taking part in most types of research, even those that include blood tests and MRIs, but is unsure about participating in drug testing.

Ronald understands that data breaches can happen in research but recognises that researchers take steps to protect data. He is against using his data to make money and instead wishes for it to be used to advance treatment. To improve future cohort studies, Ronald suggests that researchers improve communication with the people that have participated, perhaps through an annual information sheet. This is particularly important to Ronald as he was not aware of a reunion that happened for the cohort study which he would have liked to have attended.

The message that Ronald has for others that are invited to take part in cohort studies is to “do it” as he considers it a benefit to society. His message to researchers and health professionals is to be proud of what you;re doin.

Interview conducted in 2019.

After Ronald was diagnosed with multiple sclerosis (MS), he was asked to take part in an eyesight survey which involved him going to the hospital each week for eye tests.

Age at interview 66

Gender Male

I have MS as well. I was diagnosed with MS many years ago, but I did take part in an eyesight survey. I attended [hospital initials], [hospital name], I can’t remember the guy’s name for several weeks. Went through some tests. That’s the only thing I’ve done along with MS.

All eye tests?

Yes, yeah. All to do with vision.

Okay and for how long did that study last?

It lasted quite a few weeks. I would drive there every week at a chosen day and time and go into a certain room somewhere, I can’t remember where it was, and he was there and he would just go, go through tests with me.

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Ronald recalls having a physical examination in primary school for the birth cohort study. He hasn’t been asked to do anything else since.

Age at interview 66

Gender Male

I think it would have been. It was at [name] school and I went there when I was eight and I think it started there.

Okay.

I can remember being in a room, I think my brother was there as well, my twin brother was there as well, being in a room and somebody, we were, we had some sort of physical examination, I remember that. Weight, height, a few questions, but really that’s all I remember
Okay
nd I’ve never been examined or asked any questions since.

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Ronald used to get Christmas cards but has not had any for several years and doesn’t know if the study is still going on. He has never received any other information and missed out on attending a reunion which he would liked to have gone to.

Age at interview 66

Gender Male

They never sent anything back at all. All that came was a card, just, just a birthday card. Say, Happy Birthday,’ and all in the card was a picture of some children probably the same age as me when it took place. I always hoped it would be my picture. It was never my picture.

Okay.

So, nothing in it apart from the card.

Would you like to receive some feedback?

Very interested to learn, yes.

Okay.

Because, I mean, over the years, I did wonder if it was still going on. What it was used for. Always wondered what was the point in being in the project if, if you weren’t asked questions or got any feedback at all on it.

Have you ever visited their website?

I can’t remember. I think I once tried to find out about it. I don’t think I got too far, so really no, I have no insight into it at all as far as the website.

I’ve always thought it was a good thing. I’ve never known much about it. Never had any of the information. I’ve always thought it would be a good thing and I would wish to stay part of it, yes.

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