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.

Age at interview: 68
Sex: Female
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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.

Age at interview: 54
Sex: Male
Age at diagnosis: 51
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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.

Age at interview: 42
Sex: Male
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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.

Age at interview: 64
Sex: Female
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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.

Salma explains how a parent and baby study team keep her interested in taking part by sending a birthday card and a newsletter.

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Salma explains how a parent and baby study team keep her interested in taking part by sending a birthday card and a newsletter.

Age at interview: 40
Sex: Female
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So various things like that and my kids, they know the importance of research and so they, they’re eager, anything, whenever the [study name] leaflet comes they want to read it, they want to know what’s going on or when is the next [study name] family festival.

Okay.

Yeah so, and they get a card once a year for their birthday, so they know what they’re doing and they, they’re happy to participate as well.

Yes, yes a kids festival, children festival that my kids and many other kids look forward to, so before it was a [study name], [study name] festival, it used to be a teddy bear picnic in [park] and where there used to be, you know, many activities for kids, such as face painting arts and crafts and also what was really interesting they had a booth where they would talk to the kids about healthy eating the benefits of it and stuff like that.

Margaret receives a birthday card every year from the birth cohort study. When she was 60 and 70, she was invited to birthday celebrations with the other study participants.

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Margaret receives a birthday card every year from the birth cohort study. When she was 60 and 70, she was invited to birthday celebrations with the other study participants.

Age at interview: 73
Sex: Female
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They send us a birthday card every year and I can’t remember whether that started when we were children; I think it did.

When we were 60, they gave us a, offered us a tea at [venue]… So had a very nice tea at [venue] and then when we were 70, there was another day in [city]. It actually reached national news; it was on television and it was on, in the newspapers these seventy-year olds and yes, we felt very special there. Big photo of us all.

Fantastic, so how many of you were there?

Originally, let’s get this right, thousands…

Yeah.

…and they’ve kept, they’ve got a very good take up rate. They’re in touch with huge numbers, even though they’ve had to slim it down from time to time for research purposes.

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”.

Luke is impressed with the level of feedback he gets from a twins study he is part of. He thinks this helps keep participants enrolled.

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Luke is impressed with the level of feedback he gets from a twins study he is part of. He thinks this helps keep participants enrolled.

Age at interview: 35
Sex: Male
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I think this study is, you know, again this is something I’ve learned over time. I think this study is quite good at this and that they do put a lot of thought into providing information at summary level rather than-, they don’t provide an awful lot of information in terms of individual level data or findings but they do provide a lot of summary level information and news about what kinds of studies they’re doing.

And I think that they’re to be commended for that because I know that there are other less well-resourced cohorts who have to focus on the day to day management of their studies and less on the-, on that sort of dialogue or exchange of information with participants. And, and that, there may be a reason I speculate with you now is that I think that with the twin studies there is an issue about retention and I may be a little bit different to a birth cohort where you feel like you’re a, a kind of, you were born into a study and you feel a sense of loyalty to that study. With a twin study it’s slightly different, you’re affiliated because you feel that being a twin may make you well, you know, like a special kind of research subject but it’s very easy to ignore their messages, to ignore their invitations for further study or for further clinical visits. So I think the efforts that they put in to communicate what they’re doing is necessary, they need to retain their subjects.

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.

Age at interview: 68
Sex: Male
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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.

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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.

It wasn’t until Isobel went back to her maiden surname that she started receiving Christmas cards and an invitation to a workshop from the birth cohort study. Before this, she hadn’t known she was in the study because her parents never spoke about it.

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It wasn’t until Isobel went back to her maiden surname that she started receiving Christmas cards and an invitation to a workshop from the birth cohort study. Before this, she hadn’t known she was in the study because her parents never spoke about it.

Age at interview: 66
Sex: Female
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Well, I’m looking at it from health aspects and different things and how you’re like impacted how you are today but as I had no information or any information that went with the study, you know, I had no information about it at all, my mother and father never spoke about it. So I don’t have any idea what the, the plans were or what their, their future aims were anything like that.

Because this was the first contact I’d had and I was in my 60s I didn’t understand the background of it all so I had no background information about it at all other than a couple of Christmas cards with photographs none of which I’m in and, you know, that were on the front of the Christmas cards and that was the first I knew about it as a 60 year old woman.

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.

Age at interview: 66
Sex: Male
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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.

Age at interview: 67
Sex: Female
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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.

When trying to find out about re-joining a twins study, Jade recognised the logo on the study team’s website. She was able to easily contact the research team and they responded quickly to her request.

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When trying to find out about re-joining a twins study, Jade recognised the logo on the study team’s website. She was able to easily contact the research team and they responded quickly to her request.

Age at interview: 25
Sex: Female
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Like as soon as I found the website more recently, I recognised it and that’s how I knew it was the same thing. I mean that probably seems obvious to you, but I didn’t know much about twins studies or how many there were. I don’t think there’s actually that many big ones. But yeah that’s how I kind of knew it was the same thing. I just remember these glaringly orange kind of t-shirts I think it was, something like that.

And you’ve said you’re interested in re-enrolling. Can you tell me about that decision and how you’re approaching it at the moment?

Hm. So I emailed [twins study] and I said, asked-, I basically asked them for the data they had on us. So I asked them when we were enrolled and why we stopped doing it, and whether we could actually have access to the data. And they responded really quickly, and they said that we stopped because we didn’t want to take part. We did it for about 12 years. And they couldn’t give me the data because of the way it had been inputted, it wouldn’t actually be meaningful ‘cos it wasn’t as if it was a paper survey with the answers written on, it had all been converted into numerical values that would have no meaning to me now. However, the research team sent me a link to the questionnaires that participants completed over the years which was interesting. But they were quite open about the idea of us re-joining it.

However not everyone who hadn’t been contacted felt more communication was needed.

Jess hasn’t heard anything from the birth cohort study team since primary school, but she doesn’t mind, and she assumes they didn’t need to follow her up.

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Jess hasn’t heard anything from the birth cohort study team since primary school, but she doesn’t mind, and she assumes they didn’t need to follow her up.

Age at interview: 67
Sex: Female
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Yeah, it’s like I was part of it and myself and lots of others have been lost in the survey. It didn’t bother me because as I said, I didn’t think they thought, I think they, I think I must have thought that they were looking for something specific and I didn’t, the questions that I, how I got on in the first and the original survey, I didn’t come into that criteria, so they didn’t need to follow me up. That’s what I thought.

I’ve changed my name. I’ve moved address. I’ve done blah, blah, blah, so I don’t know how they could contact me and I don’t know when, as I said, I think that so many of my friends weren’t contacted, you know, they and I didn’t understand why, wasn’t important to me to find out why. I could have, suppose I could have said to my friend in [city, who was contacted more recently about the study], “Oh, what happened? Who did you get this information from? How did you know about it?” I could have followed it up that way, but I didn’t even think it was important to do that.

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.”

Age at interview: 54
Sex: Male
Age at diagnosis: 51
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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.

Age at interview: 73
Sex: Male
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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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