Some people we spoke to had messages for others invited to join cohort studies.
Often they were very encouraging, but some expressed some caution and felt there were important issues to be aware of. Their main messages were:
• Your participation is valuable;
• It is your decision whether to take part or not;
• Trust is important;
• Make sure you are happy with how your data will be used and what you will be asked to do in the research; and
• Taking part in research can be interesting and enjoyable.
Your participation is valuable
Many of the people we interviewed said that taking part in research was important because it could improve knowledge and people’s health in the future. Ian thought it was important to let potential participants know this. He said that, without research, “we’re never going to find out [the answers to unknowns], are we?” Nadera saw it as helping to “sow a seed in the health for the future generation” and that the “fruits” will help others. Linda said taking part in research was “rewarding” and a way of “giving something back”. Steve’s message to others is to “do it, because it can only help people in the long-run in the future so I can’t see why you would not want to do it”. Other people, like Gill and Margaret, also encouraged potential participants to “go for it” if they were offered the chance to join a cohort study.
Gill doesn’t mind that she won’t personally benefit from the research she contributes to, and says “it’s a philanthropic thing”.
Gill doesn’t mind that she won’t personally benefit from the research she contributes to, and says “it’s a philanthropic thing”.
Age at interview: 79
Sex: Female
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I think I’d say, “Go for it”. I mean it’s, it’s a, it’s not a difficult thing to do. It takes about, I suppose, half an hour or a bit longer to fill out the questionnaire and you just send it back. I mean, you know, it’s not hugely onerous from the point of view of time or effort, so I’d say go for it.
Even though they might not get any positive benefits that they can see?
Yes, yes well, it’s a philanthropic thing, isn’t it?
As a mum, Eisha feels passionately about research that can benefit future generations. She is involved in a cohort study as a participant and a patient representative.
As a mum, Eisha feels passionately about research that can benefit future generations. She is involved in a cohort study as a participant and a patient representative.
Age at interview: 32
Sex: 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-, 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 area”. “You’re from [city], it’s a backward area”. 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.
Anne feels taking part in a cohort study is a positive thing to do; it helps others and makes you feel part of society.
Anne feels taking part in a cohort study is a positive thing to do; it helps others and makes you feel part of society.
Age at interview: 68
Sex: Female
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I would say it’s obviously down to themselves, but I think it’s a really positive thing to do and I think it makes you feel good about yourself. I think, you feel you’re being useful, that you can maybe in some way help other people. Just really to re-cover what I’ve mentioned earlier that I think it’s, it makes you feel more part of your society and that you’re helping, yeah, and that’s a good thing, yeah.
Mr S encouraged more men to take part in studies like the one he was involved in. Anthony thought it would be good for the research quality if more young people took part in a study like his, rather than mostly/only “people… my age”.
It is your decision whether to take part or not
Gareth suggested that talking to a friend or family member with experience of research or healthcare could be helpful in making a decision about enrolling in a cohort study. Each study involves different activities, and so the factors to think about when deciding whether or not to take part also vary. Taking part could be time-consuming (to do the activities and sometimes travelling to see researchers), last a very long time (potentially decades), and, in some cases, involved physical discomfort (with blood samples taken, for example) or embarrassment (being asked sensitive questions, for example). Isobel wanted people in cohort studies to know that if “you no longer want to participate, then you’ve got freedom of choice”.
Not everyone we spoke to had taken part in a cohort study; instead, some talked to us about why they chose to decline. This included feeling that the aims of the research were too vague and finding some of the research activities off-putting.
Richard chose not to take part in a biobanking study. Whilst he was mostly happy with his decision, he doesn’t want to dissuade others from making their own choices.
Richard chose not to take part in a biobanking study. Whilst he was mostly happy with his decision, he doesn’t want to dissuade others from making their own choices.
Age at interview: 43
Sex: Male
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Did you feel at all guilty or have any second thoughts about saying, “No”?
Yes and no. Part of me thinks, “Yes, I am able to and should take part”. However, the cost of one individual in what is actually a population study would be miniscule. So I haven’t gone out with a flag telling other people not to take part.
Trust is important
Some people talked about building trust with the research team running the study they were in. Mr S recognised that “some people are a bit reluctant to talk about their private life” but to know that there is a good reason why the researchers might want to know and that their data will be looked after.
For some people who were taking part in studies related to their medical condition, the researchers were sometimes the same as the health professionals they saw. Sometimes this was seen as a good thing, because it meant more time and support from the professionals. But it could also be tricky – for example, if someone didn’t want to take part or continue to take part and they were worried that it might affect their relationship with their healthcare professionals and the care they would receive (although this should not be the case).
Ian takes part in a study in which the researchers are also his healthcare professionals. In his experience, a valuable relationship had developed and helped him get through some tough times.
Ian takes part in a study in which the researchers are also his healthcare professionals. In his experience, a valuable relationship had developed and helped him get through some tough times.
Age at interview: 54
Sex: Male
Age at diagnosis: 51
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Well, my message to other people is that you’ve got to learn to build trust with the people that you’re working with in the medical profession, and if you’ve got that trust, then go with them. You know, work with them and have the confidence of, of believing them and sharing and just doing everything they want, I think a lot of people might be scared. Others may be very down and depressed because of the situation they’re in, and I fully understand that. I mean, I’ve had moments where you feel depression maybe coming on, but luckily, I’ve felt that I’ve had the strength to overcome that. But again, I’ve overcome that because I’ve been lucky that the medical teams that we’ve had around us who have always been there to lift us. And if they’re prepared to do that, well then I’m prepared to give them any time they want.
So I’m a great believer that we give them as much time as possible. Yes, we don’t want it to get too much that you can’t go out and enjoy life as well, but they’ve never, ever been like that. You know, it’s from time to time, “Can you come and visit us? Can you give us a day and do things we want to do with you?” “Yeah, do it. Great”. And have lunch on them [laughs].
Mr S says participants should be open and honest when completing questionnaires for cohort studies.
Mr S says participants should be open and honest when completing questionnaires for cohort studies.
Age at interview: 35
Sex: Male
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I would just say that, just be confident and just be open, just be open and honest in how you feel; just express how you feel. If there’s something that you don’t feel comfortable about talking about, then you don’t have to, you’ve even mentioned to me. But if you don’t say something or ask the questions they’re not going to get the answers, so if you can provide information that can obviously get you to that destination where you get the answer then you, you’re going to feel good about yourself because you’ll think, ‘Well I’m going to provide that information, that will help towards finding out an answer for something. I’ve done my bit, so and at the end of the day, you’re getting to meet other people, obviously pass your information on to them. They’re obviously trying their best to gather that information and obviously try and find a result, so you know, I’m all for it in a sense, yeah.
Brian thinks it is good to take part in research with trusted institutions and organisations.
Brian thinks it is good to take part in research with trusted institutions and organisations.
Age at interview: 73
Sex: Male
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I would encourage it as long as it is a bona fide genuine- probably a public authority who you can trust - and to do the right thing. I, you know, there are so many companies out there looking for information about everything now, you know, surveys back for this and surveys back for that not recommended at all but if it’s a genuine bona fide company looking for long term solutions to problems then yeah I would encourage it.
Make sure you are happy with how your data will be used and what you will be asked to do in the research.
Most people were happy that their data would be stored and used responsibly, but some recommended that people should check they are comfortable with the arrangements. Lucy thought this was important for people thinking about joining a cohort study as well as those already involved and who are re-consenting: “you might want to find out exactly what they’re doing with the data, how it’s stored, how it’s kept, what findings have already come out of it, whether they would tell you if there was an issue that they came across while they were collecting data”. James said that, if he had the opportunity to go back to when he joined his study, he “would question” the researchers more about his concerns.
Jade said it is “important to explain to children about why they’re taking part in research and about what the research is for. And to kind of have that as an ongoing conversation as they get older, and then they can eventually make the decision themselves whether they want to participate or not”.
Luke’s message is “one of caution” about how data might be used. He thinks researchers should also be open to participants’ feedback about what they would like done differently.
Luke’s message is “one of caution” about how data might be used. He thinks researchers should also be open to participants’ feedback about what they would like done differently.
Age at interview: 35
Sex: Male
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It is one of caution.
Right.
And I suppose it is one where I would ask anybody that’s thinking about being involved in a cohort or indeed is already involved in cohort is to follow what’s happening with the data and to ask yourself whether you think that that’s the best use of your data and the data of other people who have decided to get involved in this. And we are often told, “You can leave the study at any moment,” and I feel like that’s a shame, we should be told, “You don’t have to leave, you can tell us how unhappy you are and we may be able to do something about it”.
Lucy thinks it is important to tell older children who are enrolled in cohort studies that the research is voluntary. She says researchers and parents should work together to do this.
Lucy thinks it is important to tell older children who are enrolled in cohort studies that the research is voluntary. She says researchers and parents should work together to do this.
Age at interview: 30
Sex: Female
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So I think as a baby-, I don’t mind that my mum enrolled me in the study but I do sort of think at some point there should have been a discussion more clearly about whether I still wanted to be in it and how I might want to change my participation in it.
Probably the main piece of advice would be to the parents actually, in that situation where it would be asking them to check that their child understands that it is a piece of research. And maybe this is more the job of the researcher but I think it should be facilitated by the parent as the child becomes more kind of able to understand different concepts about voluntary participation versus, you know, necessary medical help. Like a medical appointment that you kind of have to go to and you have to take part in the tests and have everything done for your own kind of medical benefit, versus research being something that you can stop at any point if you’re uncomfortable. So I think all of that needs to be communicated to children in ways that they understand better, and parents and researchers I guess need to work together to be able to do that.
And then just to be ready and aware that at some point you maybe need to discuss with your child again about-, about what it means to take part in the research and that they may choose not to do it, and that would be okay too if that’s their choice.
Taking part in research can be interesting and enjoyable
Several people, like Keith and Gareth, had found it fascinating to take part in research – in terms of the activities they did and the overall aims or findings of their studies.
Keith encourages others to take part in cohort studies. He finds the research interesting as well as hopefully improving knowledge and practice.
Keith encourages others to take part in cohort studies. He finds the research interesting as well as hopefully improving knowledge and practice.
Age at interview: 68
Sex: Male
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Well, I’d encourage anybody who was asked to take part in this sort of research to take part. Firstly because it’s interesting in its own right, it’s a fascinating exercise to- to be a part of this long-term research but also the actual information coming from the research would be put to good use and improving practice and that’s got to be good really, so I strongly encourage anybody to take part.
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