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”.

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.

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.

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.”

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.

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.

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.”

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.