Getting feedback from cohort studies
The people we spoke to had different views on how much feedback they wanted or expected from the cohort studies they took part in. There...
Messages for other people invited to take part in cohort studies
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;
- 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.
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.
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.
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.
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.
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...