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I had a sense of contributing to something of significance

Date: 15 March 2017

Category: Collaborative care

What can a patient bring to the management of a randomised controlled trial? Nigel Reed had experienced several bouts of depression and his GP identified him as eligible to participate in the PREVENT trial, which examined the value of mindfulness-based cognitive therapy for people whose depression kept coming back.

“I enjoyed being part of PREVENT” Nigel explained, “and later joined a ‘lived experience’ group of patients who support the clinical, teaching and research activities of psychology at the University of Exeter”.

The COBRA study explored whether a simple therapy for depression, behavioural activation, was any less effective than the more commonly used cognitive behavioural therapy. The research team was looking for a public contributor to join the trial management group, so approached the Exeter lived experience team. The trial management group has a formal responsibility to oversee the conduct of the trial, ensuring the protocol is followed and any problems or adverse issues are dealt with properly.

“It was happenstance that I was picked to join the trial management group,” says Nigel, “but it was a great experience. I joined the group at a stage when there were some problems with recruitment to the trial, so the group were keen to learn from my experience of being a participant in the earlier study.

"I was able to point out that during the (sometimes long) gap between recruiting a patient and actually starting the allocated therapy, it was important to keep in touch with the patients so that they felt part of the process and knew what was happening.”

The trial management group brought research experts together. “Meetings had up to a dozen specialist academics around the table but I was always carefully listened to as we picked our way through recruitment milestones, retention rates, adverse incident reports and all the other responsibilities to the trial. I felt part of the team, always given the chance to contribute ideas and ask what must have seemed like very basic questions! I was closely involved with the drafting of the Lancet article about our trial results, working to ensure that the message was clear for the reader.

“It was great to be part of a team that made a success of the study.”

  • Summary:

    Nigel Reed shares his experience of being a patient on the COBRA trial, which looked at using behavioural activation to treat depression.

About the author

Nigel Reed

Patient

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