Diabetes affects around 38,000 women giving birth in the UK (5%) and rates are increasing. Although most women have healthy babies, diabetes can increase the risk of complications such as pre-term birth, and long-term risks such as cardiovascular disease in mothers and babies. More research is needed to help provide the best healthcare for women with or at risk of diabetes, who are planning pregnancy or are pregnant.
‘I hope that by involving those with direct experience of the issue, this project will help to direct funding to the unanswered questions that affect me and many other women.’ ~ Sonya Carnell; diagnosed with type 2 diabetes before her second pregnancy.
A project led by the University of Oxford was launched with the aim of identifying the areas of research that are most important to the people concerned by diabetes before, during and after pregnancy.
Between June and November 2019, women, their families and friends, and healthcare professionals put forward their questions about the time before, during or after pregnancy with diabetes of any type. The project team received over 1,100 questions!
From the submitted questions, the team identified a long-list of questions which remain unanswered by research. Between May and July 2020, through an interim survey, the team invited women, their families and friends, and healthcare professionals to read the 60 questions and pick the ones they feel are most important. The project team received over 600 completed surveys!
‘The questions in this interim survey were those which people who live with or are concerned by diabetes and pregnancy have told us they would like answers to. They were not from researchers or pharmaceutical companies.’ ~ Dr Goher Ayman, project co-lead, National Perinatal Epidemiology Unit, Nuffield Department of Population Health, University of Oxford.
A shortlist of the most picked questions was presented at a final online workshop, early October 2020, where women, their families, and healthcare professionals agreed together that the following research questions were the top 10.
The priority research questions will also be shared with researchers and funders of health research. The project will therefore support research that answers the questions of greatest value to women, their families and healthcare professionals.
The project is following an established process developed by the James Lind Alliance, an initiative that aims to help direct research funding towards the issues that matter most to patients and clinicians.
Project funders and partners
The project is funded by the University of Oxford John Fell Fund, the Nuffield Department of Population Health, and the Diabetes Research & Wellness Foundation. Project partners are: the Diabetes Research & Wellness Foundation, Diabetes UK, the James Lind Alliance, JDRF the type 1 diabetes charity, the Oxford Biomedical Research Centre, and the Oxford Centre for Diabetes, Endocrinology and Metabolism.
Project website: npeu.ox.ac.uk/jla-psp
Team email: JLAPSP@npeu.ox.ac.uk
Tel: 01865 289 757