Perfecting the research partnership

Research is a partnership between our volunteers and researchers. Every year, we ask thousands of people who took part in health research to tell us about their experience, so we can make changes which help all patients have the best possible experience of being in a study.

The ‘Participant Research Experience Survey’ (PRES), a national NIHR initiative, has run in North Thames for the last five years and many patients from local NHS trusts have shared their feedback.

Last year 90% of the adults surveyed in North Thames had a 'good' or 'great' research experience and some gave suggestions for how to make things even better. 

Patients at North Middlesex Hospital University Hospital NHS Trust, known as the North Mid, were amongst those who provided valuable feedback. Nearly all patients enjoyed participating at North Mids, but several had felt nervous when trying to decide about going ahead. Patients suggested they might have felt better if they’d known more about what it was like, before deciding whether they wanted to take part.   

Research staff took the comments on board and came up with the idea of finding a trial patient to talk to potential participants about his experiences. They quickly spoke to John MacKenzie, who was happy to help and is now an active Research Champion for the trust.

As well as being there to speak to patients who want to learn more, John also helps raise awareness about the trust’s support for clinical research. He has already attended meetings and spoken at several local events, including a Macmillan Cancer Support cancer care conference.

The 2019/20 Participant Research Experience Survey results will be released in the next few weeks and we will be working hard with our trusts to implement more improvement plans over the next year. In the meantime, patients at the North Mid are already benefiting from the responses that participants from last year’s survey put forward.

John and the North Mid team are a great example of how patients sharing feedback in the survey can help improve the research experience for everyone.  If you have taken part in research and would like to give feedback too, you can find links to the survey on our PRES webpage, or watch the video below about John and why he decided to get involved.

Read a transcript of this video.