Cohort Studies
Communication and relationships with professionals running cohort studies
Cohort studies often follow people up over a period of time, sometimes many decades. Good communication from researchers is important so that study participants are not lost along the way, know what is going on, and stay interested and willing to take part in the study. There were different views about how much communication was the right amount and how often participants wanted to be contacted.
Good communication didn’t just provide information and updates, it made people we spoke to feel connected and a valued part of the research. As Teresa said, “They made us feel special,” or Anne, when she had received a newsletter, “I felt valued that they had sent that out to me”.
The study team started sending a newsletter instead of a Christmas card which helps Anne to feel more up to date. She appreciates they are letting people know what’s happening and keeping in contact.
The study team started sending a newsletter instead of a Christmas card which helps Anne to feel more up to date. She appreciates they are letting people know what’s happening and keeping in contact.
What’s been good is, recently, instead of a Christmas card that they sent us, they’ve actually sent out a sort of a newsletter which has had more information on it, so it’s making you feel more up to date. It’s also got a local Facebook page that I signed up to as well. There’s not many posts on it but, you know, people have been putting up photographs and things like that, yeah.
Do you have any comments about the way it is written, the information given?
Ay, I thought it was, I thought it was good. I could see it was pitched possibly at an older age range which we are now sort of thing, so. But it had details about access to websites and things like that, so that’s really good. So, I certainly read it thoroughly. Although I couldn’t repeat what was in the last one because it was quite a while ago, but I certainly followed up and looked at everything that was discussed on it and so on. So, again, I felt valued that they had sent that out to me.
And I think it’s harking back to how things used to be in a way and that it’s almost quite old fashioned. It’s almost, like a curtesy that it’s just keeping in touch, so that it’s, you know, just letting you know what’s happening. So, it is feedback, but it’s got that kind of old fashioned traditional kind of context to it that we were somehow, that’s how you were brought up, so you let people know every so often or it’s, so, you know…
Okay.
…so, I think that’s really appreciated probably by others as well as myself.
For those who saw researchers who were also their healthcare professionals, the boundaries between the research activities and their standard medical care could sometimes be confusing. Withdrawing from a study should not in fact affect your care, but this was a concern for James. James, who had a transient ischaemic attack (TIA – a ‘mini stroke’), feared that he might receive less support with his health or medication if he left the research study. George attended a group which was linked to research, but he saw it mostly as helping him get more information to look after himself. Others, like Ian, felt comfortable that taking part in the research meant they might receive ‘extra’ support but that it was also okay to stop at any point.
The health professionals Ian saw after he was diagnosed with motor neurone disease (MND) were also running research.
The health professionals Ian saw after he was diagnosed with motor neurone disease (MND) were also running research.
I mean, when we went the first time, they didn’t actually say to us, “We’ve got all these different research programmes going on. We’d like you to join them”. They were very honest with us and said, “Look, as time goes by, would you have any problem if we made contact with you about things that we do outside the clinic?” and it was done very well. And every time they asked a question, they always made it quite clear that if it was something I was uncomfortable with, if I said, “No” it was never going to be a problem. And likewise, if I went ahead with anything and I wanted to stop it, it would never be a problem. It would never do any harm to my situation, and they would fully understand.
George attends meetings where there are researchers who give him information about how to manage after a stroke.
George attends meetings where there are researchers who give him information about how to manage after a stroke.
Yeah, we have, we have to go, we have to go have a meeting every Tuesday, yeah, you have meeting and talk about, you got, somebody come, doctor or Professor or somebody and just to explain the stroke, how to manage, how to do this, do the, survive…
Yeah.
...because somebody have stroke, if it’s bad stroke he can’t do anything anymore. Me, I try to, I don’t want to sit down at home and I just try to manage myself, go to gym, go to swimming. Go to work, work every time, so I try to, to do something. I don’t, I don’t want to just sit down there and say, ‘I have stroke,’ so not a problem.
Keeping in contact
Study teams used various ways to communicate with participants and keep in contact with them, including: letters, phone calls, emails, newsletters, Christmas or birthday cards, reunions, and Facebook groups. Steve hopes he will one day see an old photograph of himself and his school class on the cover of the Christmas card he receives from the birth cohort researchers.
Louise used to receive Christmas cards and newsletters but now she looks on the cohort study team’s Facebook page and website. She was invited to participate in a sub-study through the Facebook page.
Louise used to receive Christmas cards and newsletters but now she looks on the cohort study team’s Facebook page and website. She was invited to participate in a sub-study through the Facebook page.
They used to send us much more sort of things like-, they used to send us Christmas cards every Christmas with a newsletter and updating us. Now we’ve got to be more proactive; got to keep up with their Facebook page or go onto their website and check out what’s there.
Okay.
So it’s depends how, how-, I don’t know what’s the word, yes, you’ve got to be more proactive. They’re not telling you and I perfectly understand that, so I’ve got to keep reminding myself every so often, ‘Right, Louise, if you want to find out any more about this you’ve got to make an effort’, you know.
Look on the website?
Yes, and it’s not a big deal but it’s sometimes easy to forget.
Most people said they valued the researchers keeping in touch with them. Ian gets a thank you letter after taking part in anything and some information on what’s going to happen next. He said, “They’ve been great with communicating what they’re doing and how it’s going”.
Alan Y has had regular contact with the study team over the ten year study.
Alan Y has had regular contact with the study team over the ten year study.
And to know that I have someone there that if this happens again, knows about me. So, I’m part of that study and they have all my records there and the thing the doctor at the time, she said, “If ever you need us, the number is there as well, so just phone straight back in. We have all your records and it means you’re not telling a doctor all the same things over and over again”.
Even last year when I had the eye problem, the doctor I saw, was the one who had initially seen me, say. “Oh, we’ve met before. I see in the notes,” and we were able to go over everything in the, in the nine years. Now, I’ve done ten years, that is really the end of the study because it was a ten year, but I still have the number and I can phone up at any time.
For birth cohort studies, which may last an entire lifetime, continued communication becomes even more important when participants move house, change names or leave the country.
Teresa has been part of a birth cohort study for 74 years. She thinks the study team have communicated very well with her. She knows what’s going on with the study and who to contact.
Teresa has been part of a birth cohort study for 74 years. She thinks the study team have communicated very well with her. She knows what’s going on with the study and who to contact.
I think that they communicate really well, I mean you’re not inundated you usually get something with the birthday card, you know, when we, when we had this get together a few years ago that year they sent a booklet summarising, just giving a little summary of the whole thing from the beginning which was really interesting and it does give a list of all the papers and it’s not difficult to find out more if you want to. And there was once or twice were I sort of rung up to discuss things, it’s been easy to get hold of somebody.
Sometimes communication stopped and started again. For some birth cohort studies, this was because funding stopped and then the study was restarted at a later date. The people we spoke to often didn’t know why this had happened, and some had come to their own conclusions. Louise thought contact might have been “triggered” again because she had moved back to the area where she went to school and had a baby. Steve had moved country and changed address several times and, although there was many years without contact, the team still managed to renew contact with him.
Those who were taking part in cohort studies relating to their medical condition usually knew who to contact if they had questions or concerns because the research team were also the medical team who were caring for them.
Some people had kept letters or emails which included the contact details of researchers. Barbara hadn’t kept any recent paperwork but felt she could work it out, perhaps by looking online, if she wanted to contact the researchers. Not everyone we interviewed who was part of a birth cohort study knew who to contact. This was particularly the case if their parents had not passed on any information about the study, communication from the study team had stopped or they only received a yearly birthday or Christmas card. Derek, Jess and Ronald had only received a yearly Christmas card since primary school.
Ronald used to get Christmas cards but has not had any for several years and doesn’t know if the study is still going on. He has never received any other information and missed out on attending a reunion which he would liked to have gone to.
Ronald used to get Christmas cards but has not had any for several years and doesn’t know if the study is still going on. He has never received any other information and missed out on attending a reunion which he would liked to have gone to.
They never sent anything back at all. All that came was a card, just, just a birthday card. Say, ‘Happy Birthday,’ and all in the card was a picture of some children probably the same age as me when it took place. I always hoped it would be my picture. It was never my picture.
Okay.
So, nothing in it apart from the card.
Would you like to receive some feedback?
Very interested to learn, yes.
Okay.
Because, I mean, over the years, I did wonder if it was still going on. What it was used for. Always wondered what was the point in being in the project if, if you weren’t asked questions or got any feedback at all on it.
Have you ever visited their website?
I can’t remember. I think I once tried to find out about it. I don’t think I got too far, so really no, I have no insight into it at all as far as the website.
I’ve always thought it was a good thing. I’ve never known much about it. Never had any of the information. I’ve always thought it would be a good thing and I would wish to stay part of it, yes.
When Jennifer lost a questionnaire, she contacted the researchers to ask them to re-send it.
When Jennifer lost a questionnaire, she contacted the researchers to ask them to re-send it.
Have they send you anything, a questionnaire, survey to fill in or…?
Yes, and once they sent a questionnaire and I lost it, so they sent another one and I did comment that I was glad they had sent the question, another questionnaire.
So why did you feel that you wanted to carry on participating in this study. Why?
I wanted to know if it was, what, what the outcome was going to be, but I didn’t want to be bad mannered by not replying. That was another thing too. I thought, they’ll think I’m very bad mannered.
People who had little communication over the years from the study team wanted to be contacted more often and to know more about what was happening with the study. This included wanting more information on any study findings. Jennifer thought there should be more details when they did send information through the post. She said, “I would look at the leaflets avidly and think, ‘Oh is that all they’re telling me?’… I always thought, ‘I wish they would tell me more’”. Others thought there could be more communication in between the times when they participated in tests or filled in questionnaires.
Malcolm was contacted every five years by the medical cohort study team. He would have liked more communication during those five years. He thought it was important to keep in touch with the participants to “keep the interest levels up because they’re more likely to want to participate again next time”.
People who had an item branded with the study logo said it helped to locate the study they had taken part in. Having had no contact from the study team since childhood, Lucy had spent a long time searching for details online about the study but couldn’t find any. She was invited to another study as a parent and says it’s helpful to have items like a fridge magnet to keep with a study logo on it to remind her.
Jade recalled when she and her sister were taking part in a twins cohort study, they received branded items including a pencil case which helped her to search for the study online many years later when she was thinking about re-joining.
However not everyone who hadn’t been contacted felt more communication was needed.
Relationships with the cohort study team
People we interviewed often talked about the cohort study research team in a very positive way. Some of the ways people described the cohort study team were friendly, professional, caring, supportive, approachable, and extremely pleasant. Nadera said, “They are incredibly courteous. Everyone treats you very well”. Ian remembers the researchers were very respectful of his decision not to have a lumbar puncture as part of the study he was in.
There were examples where people felt the researchers could have been more supportive, but these were fewer than the positive examples given. Lucy thought the researchers could have picked up on her body language showing she felt “uncomfortable” and she would have liked them to give more advice when she had a health concern.
When the study team were also the healthcare professionals looking after them, relationships had been built over a long time. For some people it felt like a two-way relationship. Ian says, “They make you feel as though you’re part of the team that are researching the issue”.
Since being diagnosed with motor neurone disease (MND), Ian has been going for a day of tests with the research study team every six months. He is impressed by how the researchers made him feel “part of the team that are researching the issue.”
Since being diagnosed with motor neurone disease (MND), Ian has been going for a day of tests with the research study team every six months. He is impressed by how the researchers made him feel “part of the team that are researching the issue.”
And then the really, the bigger one, was when we were approached by the team at [city] to get involved with their, I think it’s called [name of study removed], which is looking at the brain, blood samples, answering intelligent questions, basically spending a day with them every six months going through a routine of tests, questions, eye tests, all that sort of thing. And when we went there the first time everything was clearly explained to us and laid out to us and, you know, it’s been great working with the team, because you feel, they make you feel as though you’re part of the team that are researching the issue. You’re not a guinea pig that’s in a, you know, “We’re going to put you in a hutch for the day and treat you like someone that, you know, we’re going to come and visit every now and again and put a pin in you and take some blood” and etcetera etcetera. It was, “Yeah, you’ll be with us for the day. We’ll have lunch with you”. You know, everything was done nicely, very, very nicely.
Some people we spoke to had had extra involvement with the researchers. Mr S, Nadera, Salma and Eisha were all patient representatives. They are consulted about the research studies by the researchers to find out their ideas, opinions and expertise as patients and members of the public. Teresa, Brian, Luke and Barbara had been in advisory groups to give their feedback to the researchers on their future research plans. You can find out more about ‘Patient and Public Involvement’ here.
Brian took part in an advisory group to gather people’s thoughts on future plans for the cohort study.
Brian took part in an advisory group to gather people’s thoughts on future plans for the cohort study.
And I have to say that the team that’s been involved they’ve been, they’re really good, you know. Even now our last one I, I’ve just been up about 18 months ago with, they’re doing another big research project and they, they invited several of us to come and see the tests that they’re gonna do and the reactions that, you know, so it was actually just a lot of preparation work to get the survey right. So we’ve all been up there and seen what they’re gonna do to us [laughter] and get, gauge our reaction before they actually implement research.
Right, right.
So they’re actually doing that now...
Sort of consulting you?
…consulting us before they start the research
Yes, wow.
Which is pretty, pretty good I think and so it will happen, you know, because we’re having MRI scans and we’re having blood tests and head scans and goodness knows what, this is what’s gonna happen next. And but they’re actually asking about, you know, how we feel about it before they implement the research.
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