Being asked or volunteering to take part in cohort studies
Apart from those who had started the study when they were babies or young children, most of the people we interviewed could remember being invited...
Why take part in cohort studies?
People take part in cohort studies for a number of reasons. These types of studies often involve a long-term commitment, even if the actual time involved to fill in a questionnaire every year, attend a check-up or have a medical test is reasonably short. In our interviews, people talked about several reasons for deciding to take part or continue taking part in studies. The main reasons they had taken part were:
- To benefit personally by finding out more about their own health
- To progress medical knowledge and practice
- To help society and future generations.
Some people had a strong sense of why they wanted to take part, whilst others took part because they saw no reason why they shouldn’t. Lucy was enrolled in a study as a baby and continued to take part as she got older: “I just accepted that it was a thing I did and that was alright, It wasn’t that much of an inconvenience.”
Some people, like Emily and Keith, were taking part in more than one cohort study. Brian had been so impressed by the outputs, like research papers, from a cohort study he has been part of since birth that he decided to join another medical study.
Malcolm is motivated to take part in a ten year cardiovascular study to benefit his personal health and to benefit society in general.
As researcher Jenny explains below, taking part in a cohort study is unlikely to have a direct impact on the health of the individual. However, people described to us many other kinds of benefits which they felt were important.
Jenny, a senior researcher, says that there is unlikely to be direct benefit to participants in cohort studies.
For personal benefit
One reason why people we talked to took part in cohort studies was to find out more about their health. Alan Y was curious to find out why he had a transient ischaemic attack (TIA, a ‘mini stroke’) when he had an active and healthy lifestyle. Gareth, who took part as a healthy volunteer, explained, “I always record when I exercise, record my weight and anything that gives me some more information to go on would be interesting.” Malcolm had high blood pressure and wanted to know how his heart valves were working. Isobel, who contributed to an asthma study for about eight years, said, “It made me more confident about my own asthma.”
Nadera had a DEXA scan as part of a cohort study. She was curious to find out what was happening inside her body.
Some cohort studies involve regular health checks. People in these studies often valued the opportunity to have these check-ups and tests as they age, so they could keep an eye on their physical health. They wanted to get a warning if something was going wrong and reassurance if all seemed well. Some described taking part in research as getting a kind of ‘health MOT’ or ‘extra check-up’ because it gave them some feedback on their health. Douglas, who found out he had high platelet levels while taking part in a cholesterol study, said his health checks are “very thorough” and “for that alone it’s worth going.”
Lucy has been taking part in a study for 30 years. She hopes that it might spot any health problems that are occurring.
People who had a family history of a health condition were reassured by additional regular health checks and medical tests.
Gareth has a family history of high cholesterol, so he likes to keep track of it. The study he is taking part in is one way of doing that.
People who had been diagnosed with a medical condition felt there were personal benefits of taking part in long-term medical studies. Being able to talk to the research team over the course of the study about their health concerns or to get advice about new symptoms was one advantage. After having a stroke, George attended a group associated with a research group and he found it helpful learning more about how to manage his health. Another was having access to a team of specialists who were at the forefront of their field and knew the latest information and treatments. John, who had been part of a study on transient ischaemic attack (TIA, ‘mini stroke’) for ten years explained, “It was a privilege to be associated with such an extraordinary department and part of a group of people who were interested in the whole condition.”
When Alan Y had new symptoms that he wondered might be related to a transient ischaemic attack (TIA), it was reassuring to know he could talk to the research team who had access to his medical files and could advise him.
Some people, like Gareth and Linda, talked about their curiosity and interest in research as being a motivating factor. Gareth described taking part in medical research as “part of a hobby.” Anthony described himself as “a sucker for these research things.” Those who had been in a birth cohort for many decades often found it interesting reflecting back on life in the past and what it was like compared to now. As Jennifer said, “I think everyone would be interested in a study that start in the ’50s, I’m fascinated by history.” Being part of a big study made some people feel special. Luke thought that researchers in twins studies sometimes told potential participants “that we as a group of people are quite unique. For many people, that’s a highly motivating thing to be told.”
To progress knowledge
To improve knowledge and progress medical practice or social policy was a common reason why people we spoke to took part. People thought there was great value in studying large numbers of people over a long period of time which could provide vast amounts of information and help discover patterns within the data.
The wish to improve medical knowledge was often mentioned by those who were in a study because they had a particular health condition. While they were aware that there was unlikely to be any direct impact on their own health, the hope was still important. As Roland said, “If a cure could be found for MND [motor neurone disease] in my lifetime, then I’d be foolish not to want to take part in research to help find this cure.”
Lucy believes cohort studies are important for collecting large amounts of data to discover patterns which will help to inform our understanding of medical issues.
Longitudinal medical research can also include healthy volunteers, as in the case of Gareth who took part in a study on metabolism. Gareth felt he could contribute towards a better understanding of how a healthy body works and so help people in the future.
People we interviewed who were babies or young children when their parents agreed for them to join a study were seldom aware of why their parents had made this decision. As adults, people often continued taking part because they felt there was great value to studying people over long periods of time which would produce a huge amount of data that could be used to inform medical and social practice. As Jade, who took part in a twins study, said, “There are just so many questions that this kind of data can answer.”
Margaret had been part of a birth cohort study for over 70 years: “I’m very proud of it, I think it’s important to-, if it helps in medical and social research, I think it’s important to stay with it.” Not everyone felt the same way, though: Isobel said people who had been signed up from birth by their parents should not be worried about stopping if they no longer felt comfortable with it.
Being part of research which may contribute to a change in social policy was also a reason why some people chose to keep taking part over many decades in birth cohort studies.
Steve hopes that by participating in a birth cohort study, his experiences of a turbulent childhood can be used to improve the health and social care support systems for future generations.
To help others, support the NHS and contribute to society
Taking part to help others was a common theme, whether it be people in their community, future generations, the NHS (National Health Service) or society in general. Barbara and Lucy described this as an “obligation”, and Nadera and Anne saw it as a “duty”. Linda felt that “we’re only on this earth for such a short time and if you can, you know, do something to give something back.” Isobel took part in an asthma study for about eight years which involved going to the hospital on her days off to test different inhalers. Although it was time intensive, she wanted to do it to help children with asthma. She explained, “It’s the only way we can learn.” Salma wanted to know more about what causes certain diseases and how they can be prevented to benefit her family and her community.
Taking part in medical research is Elaine’s way of contributing to society. She thinks it’s better than running a marathon to fundraise.
Others simply wanted to give something back after having such good care from the NHS during their illness. As Gill explained, “I was happy to do it. I’d worked for years in the NHS and, actually, at one point they had saved my life and so I thought, ‘Well, this is something I can do to pay back, perhaps’.”
Attitudes to other types of medical research
We asked people what they thought about different types of medical research, and whether they would be interested to take part again in another research...