Cohort Studies
Attitudes to other types of medical research
When we talked to people who had taken part in or been invited to join cohort studies, we also asked what they thought about medical research in general. Some had experience of taking part in other medical studies. Anthony described himself as “a sucker for these research things”. Like some of the other people we spoke to, for Steve, Rafi and Iram, the cohort study was their first and only medical research experience.
The reasons why people took part in cohort studies were often the same reasons they had also taken part in other types of medical research: for personal benefit and curiosity, to progress knowledge, and to help others and contribute to society. Jennifer and Isobel were keen to support medical research because they had experiences of being unwell.
John thinks medical research is vital and the only way to move forward.
John thinks medical research is vital and the only way to move forward.
To me, medical research is vital. I’ve been involved in science all my life and I know that the only way to move forward in anything complex is through research and we have come so far in the last century with medical understanding. It’s come from research. It’s not random that we now enjoy the benefits of an extraordinary health system and I’m very happy to take part in any research because I think that’s the only way that, that we will move forward and there are plenty of issues that need further research and if I play a small part in the physical research or the outcomes of medical intervention then good.
Most of the people we talked to were in favour of medical research. They believed it was the only way to learn and progress, and could make things better for society. Teresa explains, “The more knowledge we have, the more equipped [the] medical profession is to do something of benefit”. Elaine, who took part in several research studies as a healthy volunteer, believed that “they’re never going to make advances in any area of medicine if people don’t volunteer”.
People said they could see how medical knowledge and technology had progressed in their lifetimes – some of which they, their family or friends had benefited from. Alan Z and Isobel felt that laboratory-based research and animal testing were important but added that medical research with people was needed too. Isobel explained, “I don’t care how many mice or monkeys or anything else, they’re not human beings and you don’t know the effects things are gonna have on people until they’re actually tested on human beings”.
Anne has seen the emergence of joint replacements in her lifetime and now, in her 60s, has seen colleagues and friends benefiting from these advances in medicine.
Anne has seen the emergence of joint replacements in her lifetime and now, in her 60s, has seen colleagues and friends benefiting from these advances in medicine.
I’ve seen, you know, when I was working then as physio, hip replacements were a new thing that had just come in and people were having these operations and you could see the benefit it was having for people. Now in my late 60s, I’m starting to develop arthritic joints and things like that, and I know that joint replacement is, is fantastic, you know, I’ve got colleagues and friends that have fake joints and, you know, they’ve got a second lease of life, so I think anything at all that is going to help.
Not everyone we talked to thought current approaches to medical research were always the best way though.
Nadera believes advancement in medical technologies, such as keyhole surgery, are beneficial but there should be less focus on using drugs to cure illness and more on simple approaches taken from nature.
Nadera believes advancement in medical technologies, such as keyhole surgery, are beneficial but there should be less focus on using drugs to cure illness and more on simple approaches taken from nature.
Yeah, drugs and the other part I also mention, all the surgery is very good. They save so many lives. I had five caesarean myself and I did try all the naturopath, natural way to give birth and all this and I think surgeries are very, very, very, what do you call achievement medicine has done, you know, developing all this way of operating keyhole surgeries, all this quite interesting. So, I would say all medical science is not right. Just far as concerned by the drugs, yes, I am. I would not put so much drugs in anybody’s body because we know the body has a way of healing itself. Some bodies harder, takes longer, people are more susceptible. Again, it’s environmental factor but go back to nature as much as we can. We will have less plastic waste, less ozone, you know, less carbon dioxide problem because back that time people used to use banana leaves, you know, to use recyclable, like, doing something simple rather than high tech.
Mm, so you think medical research should be more interested in this kind of way of…?
Yeah, the resourcing, environmental friendly and go back into nature.
Richard feels medical research should focus more on quality of life rather than treatments to prolong life if those years are spent unwell and in pain.
Richard feels medical research should focus more on quality of life rather than treatments to prolong life if those years are spent unwell and in pain.
Most medical research I think is extremely valuable. And most of it that I can see has a distinct trait of saying, “Is this better? Or is that better?” and a randomised control trial to test the two. And that seems to me to be innately useful. It does result in advances in medicine, and it results in better use of money that is spent by taking a better course rather than a worse course.
I do have a, a second attitude to medical research, which is a bit bizarre, which is that it is not altogether a good thing, if a hundred years ago you had a life expectation of 50 years with a very short illness and then death, whereas now you might live to the age of 80 but have prolonged illness. And I don’t think that the unintended consequences of medical advance as well as social and other advances has been fully taken account of in saying, “What does the human race really want? What does it need?” It needs to focus a lot more on quality of life, and particularly in the end-of-life years, so that we don’t all have a prolonged period of illness to look forward to. So I don’t a 100% subscribe to all medical research being a good thing, particularly if it is spending enormous amounts of money prolonging end of life, as opposed to an alternative approach, which might be to think about the quality of life and the spiritual aspects.
Types of studies
There are lots of ways to carry out medical research. As well as cohort studies, some people we spoke to also took part in other types of medical research studies, such as randomised control trials. Some people took part in studies related to their medical condition. Others were involved in studies related to a wide range of topics.
Anne takes part in medical research studies as often as she can. She believes it’s part of being “an active citizen”.
Anne takes part in medical research studies as often as she can. She believes it’s part of being “an active citizen”.
My husband is also a research biologist who is collecting data all the time and analysing it and I know from him just how important each little part can be and, although, I’m just one person, I feel that I can contribute in some way. Over the years, both my husband and I have actively agreed to take part in studies that the hospital have put out requests for and so on. So, I just see this as another part of partly being kind of proud of being a child of the ‘50s, but also being an active citizen, so I see it as a public sort of duty in a way almost.
Yes, there was two different ones that we signed up for. One; my husband and I did it together and it was based at the hospital in [place name] and it was relating to diet with regard to is it lycopene in tomatoes and to see whether eating a more Mediterranean diet with a lot of tomato in it would be beneficial to your health and so on.
So, we did that. I think it lasted over a period of about 16 weeks.
Okay.
So, we had to sort of go to the hospital usually about once a week, early in the morning before breakfast to have blood tests and all our vital signs were recorded and so on. They then gave us breakfast and then part of the study was that they put us on one of the diets which they were testing out, so we were, and we were also given a diary that we had to complete, so we had to write down all the food that we ate and so on, for the period that we took part.
Okay, so they were taking blood pressure and things like that?
Yeah.
So once a week you were, you had your blood taken?
Yeah, yeah, yeah.
Okay what did you feel about that? [Laughs]
[Laughs] It’s not my favourite thing, but I have to get blood done every so often because my thyroid needs help, so I’m kind of used to it, but, again I thought, ‘Yeah, I’ll do this because it’s helping the study.’
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.
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.
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.
A few people were planning to donate their body or organs to medical research or training after their death. Like Anne, they saw this as another way they could contribute to improving knowledge and practices in medicine.
A birth cohort study is Steve’s first and only experience of medical research. He is happy to share information about his experiences, but he doesn’t plan to donate his body parts after death for research.
A birth cohort study is Steve’s first and only experience of medical research. He is happy to share information about his experiences, but he doesn’t plan to donate his body parts after death for research.
No I haven’t participated in anything else, this is the only thing.
Okay.
I mean there is a limit to how much participating, I mean, I don’t wanna give my, when I die I don’t wanna give my body parts away to, for medical research, I don’t want that. So, you know, there is a limit to how far I’ll go on helping with assistance, you know, I’m happy to converse and tell you anything you need to know about my previous life and my, you know, my anxieties and all the stuff that leads up to now but I don’t wanna, there are certain things I wouldn’t do.
Okay.
And that’s one of them.
While supportive of medical research in general, often people had clear views on what they would or would not be willing to take part in. People we spoke to usually had no problems with answering questionnaires, filling in diaries or providing information, taking part in basic medical tests, or giving blood samples; however, they were far more cautious about taking part in drug trials or studies which involved invasive tests, such as surgery or lumbar puncture. Isobel said, “I wouldn’t want to be sliced up or anything like that”. Richard did not agree with giving his data or samples to studies which did not have a specific aim or purpose.
Ian, who has been diagnosed with motor neurone disease (MND), is happy to take part in most medical research apart from anything is likely to cause him pain.
Ian, who has been diagnosed with motor neurone disease (MND), is happy to take part in most medical research apart from anything is likely to cause him pain.
But my other view was that if I could help others I had nothing to lose, so this is how I got involved in offering my services to research. I was fairly particular about it, in that I was happy to do any research, I was happy to give any samples, sit in machines, have MRIs, anything that was required, but the one thing I was against was having to go through any pain barrier, unnecessary pain barrier. So the one thing that I’ve eliminated from any research is things like lumbar puncture, but otherwise here I am and happy to discuss things with people, talk about my experiences, and anything else that medical research wants, I’m there for them.
Gareth is a healthy volunteer in a study. While not willing to take part in studies which involved testing new drugs or being injected with insulin, he felt by being a healthy volunteer he could provide useful data for research studies.
Gareth is a healthy volunteer in a study. While not willing to take part in studies which involved testing new drugs or being injected with insulin, he felt by being a healthy volunteer he could provide useful data for research studies.
There was, a few years ago there was, three or four people were extremely ill on, on drug trials. And certainly, knowing about that, if there’d been drug trials involved, I probably wouldn’t have been at all interested. But, you know, the, the driver for this research seems to be measuring how healthy people work. So what’s the metabolism in a healthy person? And I do feel that’s got to be important. I’m an engineer and we work on big diesel engines. And one of the hardest things to do is somebody comes along and says, “This thing’s broken”. And you ask them, “Well, how is it supposed to work?” And they haven’t really got an idea. And, you know, so I can see, you know, parallels, medical needs to know how a healthy body works and a range of healthy bodies.
I mean, I like to pride myself on keeping myself healthy. And I suspect not a lot of healthy people would necessarily volunteer for this sort of thing. You get people who are quite obsessive about their health and they probably wouldn’t want to go on something like this. And I just felt that I had something to offer, in a reasonably healthy body, getting on in years, and I just felt it would be a useful data point for them.
Compared to a clinical trial, Derek is happy with the activities involved in his cohort study and doesn’t feel there are any risks.
Compared to a clinical trial, Derek is happy with the activities involved in his cohort study and doesn’t feel there are any risks.
Yes it’s not as if they’re asking you to do anything that’s gonna cost you anything and hopefully what you do is gonna do some good.
Okay.
It’s only a little bit of time at the end of the day.
Trial, I mean trialling drugs on people is something totally different. I’m not-, I would want to know quite a bit more about it before I would agree to something like that. But just a question of information, I don’t see there’s any.
Not everyone we talked to was against taking part in invasive tests for research studies. Elaine, a healthy volunteer, had a sample of blood taken from an artery in her leg and also samples of fatty tissue from her thigh and abdomen. Afterwards, she was “a little bit bruised and… sore” but she was also impressed by how “kind” and reassuring the research team were. Linda had taken part in lots of studies for a memory clinic which included having MRI scans and lumbar punctures. She had been assessed by the research team to take part in a drug trial and wasn’t eligible – it was “bittersweet” because they found she didn’t have the risk factors they were studying, but she was also disappointed that she couldn’t participate any further.
Some people, like Ronald and Ian, felt uneasy about commercial studies and research by pharmaceutical companies. They were supportive of more advances in medicine but felt uncomfortable about a profit being made from this. Others were less concerned. Derek said he didn’t mind if the data he provided in a study was also used by companies for medical research: “if they use what they need and there’s something left over, is it not better that it’s put to good use, rather than just wasted?”
John and Emily thought the advertising of medical research studies and their findings should be more accessible to the public. Ian and Nadera suggested ways to improve medical research studies.
Emily wants to take part in many research studies but says it is difficult finding out what is available. She suggests producing a website where people can search for available studies depending on their specific criteria.
Emily wants to take part in many research studies but says it is difficult finding out what is available. She suggests producing a website where people can search for available studies depending on their specific criteria.
Yeah well so some of them like the psychologists at the [Hospital] you know, do this paper stuff with the daily info circulation which is quite interesting and I quite often see those but it’s not consistent. If you go on websites you’ll find you’re in one for the whole world so then you’ve gotta try and focus it down and really I prefer things to be in [place name] and so it’s quite difficult, and then and quite often they’ll say, you know, aged 25-55 or something like that. So what they really need is a website where you can say this is my age, this is my gender, this is my location, show me everything that fits with those criteria but they don’t have that.
Ian wishes there could be more sharing of data and knowledge with researchers in different countries.
Ian wishes there could be more sharing of data and knowledge with researchers in different countries.
And I asked on the last visit what they were doing with our blood samples, and etcetera etcetera and they were very open in saying, well, one of the big things is they’d really like to share the samples they’re getting from the UK group with more worldwide groups, particularly in the USA. But some of the issues around importing and exporting blood were stalling these things, and therefore there was difficulty getting blood samples into the USA and out of it.
And of course, there’s a lot of research going in the USA for MND as well. And it sort of opened up other questions about how crazy this world is, you know. We live in a global, a very open global society now, where communication travels in seconds, and yet someone somewhere else in the world might have some information on an illness and it’s very difficult for them to share it with another area of the world that’s got different information that could lead to some breakthrough, you know, medical phenomenon. You just don’t know. And I, I just found it very, very sad that when it comes to medical research, the world is still very much down to communities as opposed to globalisation.
Nadera encourages researchers to work with patients and the public when designing and carrying out research.
Nadera encourages researchers to work with patients and the public when designing and carrying out research.
We are all like building blocks of society, so we have a like a triangle, right, so most of the information should, is coming from the foundation people and people like yourself or doctors/professors, they are in the hierarchies. They will overlook it, but they have not all the answers unless you connect with the people at the bottom, so which is myself, mothers, children, parents, grandparents. I think that’s why it’s very important that the research team works closely with the population because at the end you will solve us, you will solve our problems. You will help us to understand future diseases, future problems so that’s why I believe research is a very good thing.
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