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Public, patients and researchers co-produce research on gum disease and diabetes

Patients, members of the public, healthcare professionals and researchers have taken a new approach to research design by co-producing plans for a study on the link between gum disease and diabetes.

Patients, members of the community, diabetes and cardiovascular health professionals, gum health professionals and clinical trial statisticians met on 14 January to reflect on how the co-production had gone.

From September 2018 to January 2019, project team members, supported by the UCL Centre for Co-Production in Health Research, took part in a pilot project to design a follow-up study to recent UCL research which found that treating gum disease could help patients with diabetes control their blood sugar levels.

The new, co-produced study will test whether the effects found in UCL’s initial research – carried out in a highly controlled setting – can be replicated in a community setting. Researchers said replicating the effects would make a big difference in helping patients to control their diabetes, and could save the NHS millions of pounds. The team have now applied for funding for the study from the National Institute for Health Research.

Traditionally, researchers have designed studies without the involvement of patients and the public. But the UCL Centre for Co-Production is working to challenge this model, and in 2018 launched 3 other co-production pilots alongside the project on oral health and diabetes.

The project team, which included patient co-researchers Heather Johnson and Brian Potter, who have diabetes, met from September to January to develop the study, and held an event in central London for patients and the public to contribute their ideas to the study design.

The project group said involvement from patients with diabetes was particularly helpful when considering the best ways to encourage people with the condition to take part in the study, and how to ensure patients on the trial attend follow-up appointments.

Ms Johnson said: “It has been very interesting and rewarding to be part of the co-production team for the diabetes and oral health project. There was a lot of learning to do in a short space of time, but I was really pleased to be able to use my own knowledge and ideas to help drive the project forward. The whole team were very supportive and I think we demonstrated how beneficial a co-production approach can be.”

Lusine Hakobyan, project co-ordinator from the UCL Eastman Dental Institute, said: “Researchers have different perspectives from those who have lived experience of conditions. So research planning and delivery is improved when we bring these perspectives together.

“For this research, it was so important and helpful for researchers to work in partnership with patients with diabetes.”

Co-production project lead Professor Ian Needleman from UCL Eastman Dental Institute said: “In the very short timescale of the project, I have learnt just how powerful co-production can be to improve research, develop strong community engagement, change minds and empower people. The potential value for healthcare research is obvious.”

Read more about the project on the UCL Centre for Co-production in Health Research’s website.

Read about all 4 co-production pilot projects.