Messages to research teams running cohort studies

We asked people we spoke to if they had messages for professionals running cohort studies. Firstly, many wanted to say words of encouragement. Anne said she “really appreciates what you do” and encouraged others to give research teams “support”. Ian said, “Keep up the good work” and Alan Z praised his study team: “you’re doing a really brilliant job”.

Keith would like to say thank you to the research teams of both cohort studies he took part in. His experience has been very positive.

Age at interview 68

Gender Male

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I don’t think there was anything I would say to improve practice but what I would say is thank you because they’ve always dealt with me with the utmost civility and friendliness and, and information has been good and given and if they continue in that way as they have with me then it can only be, you know, a contributing factor to the success of the research. No, I’m very positive about the whole experience in both cases.

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People we spoke to also had suggestions for ways cohort studies could be improved for participants. This included ideas about how researchers could raise more interest from potential participants or support current participants. Their main messages were:
  • Maintain communication and provide more feedback to participants;
Good communication from researchers was appreciated by many of the people we talked to, and they encouraged researchers to continue doing this or to do more of it. Linda said the researchers kept in touch and this helped her feel she was still involved.
A key message from many people was for study staff to provide more feedback on study findings, what the information is going to be used for, and updates on what the study is planning to do next.
Many people thought a yearly newsletter, which could be included in the annual birthday or Christmas card for some birth cohort participants, and with a website link for more information, would be a good way to provide this. Malcolm thought updates of a few sentences or pages long would be sufficient. For studies which give participants individual test results, some people like Nadera felt there needed to be more information to help them make sense of the results.

Nadera suggests giving people more explanation when they get their individual test results.

Age at interview 39

Gender Female

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And do you know the results of these tests?

Yes with-, without explanation though
Okay.

hich I would say would, they should do. But they’re, Everything is norma. Yeah, okay, normal for them but which norm-?’ They had graphs as well, so I went back myself, researched it, looked up and what it means, my subcutaneous fat, there’s my visceral fat plus my bone density, yeah.

The feedback is the bigger thing that, as I say, again and maybe more written stuff I understand will be hard for the admin to do too much paperwork but just copy some of the end results maybe in a few lines in a summary, drop it back to the parents, drop it back.

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Some people were positive about researchers using different ways to communicate (post, telephone, online). Malcolm and Isobel highlighted that it’s also important to cater for those who don’t or can’t use the internet.
There have been some ‘get-togethers’ for participants in birth cohort studies, and those who attended were usually very positive about these events. Barbara and Jennifer had enjoyed the meet-ups and would have liked more of them earlier in the birth cohort study. Barbara explained, “It’s a lonely thing because you’re just doing your little bit. Because you’re only just filling in these forms now and then, you don’t know what’s happening.” Jade, whose cohort study activities had not involved meeting other twins, thought meet-ups would be fun.

Malcolm feels it is polite to give some general feedback on the study and that a short summary every year would be well-received.

Age at interview 75

Gender Male

Age at diagnosis 48

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Yeah if you’re volunteering yourself and your information for a study, you know, it’s only, it’s only sort of, well it’s nice to be able to be informed about it. it’s polite, isn’t it, to give some feedback other than just results on your own physical test.

Just little updates not in-depth just a few lines, a few pages of report maybe or a page of a report, an update, a few bullet points. it’s quite easy to produce a report in an easier understanding format that anybody can understand.

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  • Recognise that participants and potential participants are important, and work with them;
Some people we spoke to were keen to give their feedback on individual studies to study staff. Some were in roles as public-patient involvement (PPI) representatives and advisers. Mr S became a ‘Dad’s Champion’ for a birth cohort that his children were enrolled in, and this included giving feedback on proposed sub-studies and running a stall to encourage more fathers to join the study. Nadera thought it was important that researchers listened to participants and people who might take part in their studies. She attended meetings “to speak for the community.”

Barbara has advised the researchers of a birth cohort study she is in about a sub-project they are planning.

Age at interview 73

Gender Female

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And then last year I did participate in a focus group. It was about this time last year which was a group and there-, they were really discussing almost the next stage and they were planning again, whether the funding’s there to do things like MRI scans on people and how we would react to that because I think a lot of people, things that are more invasive, I think some people would be quite reluctant to participate. So that was quite interesting on how we felt about it and how they could actually, I suppose sell it for want of a better word to us.

And what were your feelings about it?

Well I, you know, I, I’m, actually I was-, interestingly a lot of us felt very nervous about the thought of having an MRI scan just for, for research purposes. it’s one thing having something like that if you need it but they were very reassuring and I think quite a few of us who might have been reluctant but came away from that, I mean it was just a couple of hours and the lunch I think, just, you know, came away feeling quite confident and I think we, you know, would participate.

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  • Ensure study documents are written clearly and, if possible, provide them in multiple languages;
In general, people said it was important to keep language and terminology simple. Emily also wanted researchers to carefully proofread their own study documents, as she had found many typos. Nadera encouraged researchers to provide study documents in multiple languages for people who don’t have English as their first language.
Some people talked about certain questions on questionnaires being poorly phrased. It could also be unclear why the researchers were asking certain things, and this was all the more important for personal and sensitive topics.

Mr S thinks some questions in questionnaires are personal and people may be reluctant to answer them. He encourages researchers to carefully phrase their questions and explain why they want to know.

Age at interview 35

Gender Male

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Yeah, I’d say obviously certain questions that they do ask are quite personal, you know, some people are a bit reluctant to answer those, you know?

What kind of questions would that be?

You know, for example, you know, like you were talking about people’s private lives and all that. Certain people, I’m not saying everybody, but some people are a bit reluctant to talk about their private life and everything like that, you see, so they might want it to be, you know, explained in a different way for example.

So that’s where, you know, I think [cohort study name] might have to look into and think, We may have to look at the way we’ve worded stuff or like the way this questionnaire is it could be that these questions could be a bit sensitive to the patien, for example, and they might not want to answer that – so we might have to look at the wording of that, the structure of tha and then obviously that might help, on a positive note improve the information. I don’t know what the results but I’m just thinking that it’s, some people are quite open, and they’ll just answer it, like myself. But some people are a bit reluctant because they think even though it’s all data protection and everything’s private and confidential – still they have that in the back of their mind, do I really want to answer that question?’ Do you know what I mean?

Yeah.

But then again, I’ve seen on the questionnaires, it says, if you don’t want to say, prefer not to say, you don’t have to say but then it says that if you, I think on one of the questionnaires, it was saying that if you don’t answer them then we might not get an accurate result.

Okay.

You know what I mean, so? It like contradicts itself in a sense, where you’re saying, Look, okay, don’t answer it, but then if you don’t answer it, if you prefer not to say, you’re not giving it here, like if you don’t answer it, yes or no for example then, you know, the results are not going to be- you know.

So, there’s like a little bit of pressure to

Pressure, yeah, yeah, yeah, I think yeah. So, I think that they could look into that and change that particular aspect.

So, can you think of an example of a question that you think may be uncomfortable answering?

I think, for example, like their religious belief. I think some people are a bit reluctant to talk about that, might have a bit of an aspect of, Why do I need to answer that question?’ you know what I mean? I’m quite open about that but I think, some people think if I answer that question, Oh look, is that going to differentiate me in any way’, and I think another question maybe, What’s your origin?’ I think sometimes they may be thinking, if I mention that they might think, oh, just targeting certain areas. So even though I’ve always answered it myself, I’m just saying that some people may feel a bit uncomfortable with that. Or even talking about whether or not the family members have had a certain condition, you know, or an illness.

But I think, Why are you asking that?’ is the thing. I think that’s the most important thing, I think if someone knows why they’re asking it then they’re going to be more comfortable giving an answer. But if you’re just saying, Oh look, we want to know if you’re this, this and this?’ and I’m thinking, Well that’s quite a delicate or sensitive matter, why do you want to know that?’ And they’re obviously having to think about, Well, why are they asking me these questions?’ I think, like you said, if they’re given information like prior, that this is what we need it for then I think the person will be more assured.

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  • Make sure people know their rights about being in a study and offer opportunities to talk about any concerns;
Taking part in a cohort study is a choice, and it is not something anyone should feel pressured to do or continue doing. Luke suggested offering people an opportunity to discuss why they may want to leave a study to see if it can be remedied rather than saying that they can leave at any point.
Those who had been enrolled in a study as a child often felt that this topic needed to be revisited at a later date when the person was older. It is important to make sure they are re-informed, re-consented and given the option to opt out. Some birth cohort participants we talked to had been unaware for many years that they were taking part in the study because the information had not been passed on from their parents. This left some feeling unsure about the purpose of the study and what their information was going to be used for.

Malcolm suggests giving people soundbites of information so that they become interested in the research and want to participate.

Age at interview 75

Gender Male

Age at diagnosis 48

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The main point is to explain that benefits I think to both of them, to them and to-, to the research that they’ll be contributing to. Or to the programme, the project that they’ll be contributing to but also benefits to them. I think- I think that’s the only way you can get people to participate. I think you can’t force people, you just have to raise their interest level, so I think you- you can pick out issues that would be informative to them from the- from the tests that you’re doing from the project that you’re doing and say, Would you like this to happen, would you like to take part in this because- You know, fixate on something that maybe would interest them rather than turn them off. So maybe a lot of information is good to certain people but small snippets of information is good for others, you know, sound bites. I think that’s the only way you can get people interested is by just giving them more information.

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At the same time as not putting pressure on people to participate, the people we spoke to encouraged researchers to educate potential and current participants on the benefits that cohort studies can bring to the public.

Eisha believes her cohort study is doing [an] amazing job at bringing change to her local community.

Age at interview 32

Gender Female

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Yeah, I just want to say this is, this is a fantastic thing, you know. I mean, people like me who, I’m a mum and I think that is the best title I love to wear; a mother because I’m bringing up my kids which will be the future generation, right? And I would love to have, I would love them to have a safe and secure and developed place to live. I don’t want them to feel that we are living in a, you know, deprived’ is a very sad word. Deprived is a very harsh word to say, I think. Why we are deprived?’ because we live in England, you know and, and people say deprived area. It hurts me when people say, You’re from [city], it’s a deprived are. You’re from [city], it’s a backward are. It is not. I want everybody to know that it is a beautiful place to live. People and community around me is amazing and there’s some fantastic research going on. [study name] is doing amazing job and it is bringing change in lots of people’s life. As I mentioned, if you would have met me three or four years ago, I was completely different person and I grow as a person because I was participating into something which I felt is needed. So, all I want to say is what [study name] is doing is we need that. it’s a need of the time that we should bring the change for the kids for the future, for the future of [city].

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