JDRFStoriesSteering the course of research: Putting women with diabetes in the driving seat

Steering the course of research: Putting women with diabetes in the driving seat

Author: Caroline's story | Posted: 28 June 2021

JDRF’s Research Partnerships Manager Caroline Schmutz

Last November, the Diabetes and Pregnancy Priority Setting Partnership (PSP) announced the top 10 research priorities for diabetes and pregnancy. Following the publication of the full paper in May 2021, JDRF’s Research Partnerships Manager Caroline Schmutz talks about how JDRF helped bring the experience of women with type 1 diabetes and their support networks to the table.

Diabetes and pregnancy

Diabetes of all types affects around 38,000 women giving birth in the UK[1]. We’ve come a long way from the days where women with diabetes were advised against having children altogether. But there is still work to be done to support women with diabetes throughout pregnancy to make sure we get both healthy babies and mothers. We know that currently, there is incredible variation in the level and type of care provided across the UK, ranging from excellent to barely there.

While working with women from around the country who had experienced pregnancy with type 1 diabetes, Dr Göher Ayman and Professor Marian Knight at the University of Oxford became aware of the lack of clarity and consistency in the care provided to women with diabetes before, during and after pregnancy.

This feedback led to the Diabetes and Pregnancy Priority Setting Partnership (PSP), which published its full findings in May this year.

Bringing type 1 experience to the table

The aim of the PSP was to establish the research priorities for diabetes and pregnancy by asking the people it most affects – women with diabetes.

The initial survey gathered over a thousand questions about diabetes and pregnancy from over 450 women living with any type of diabetes – with or without experience of pregnancy – as well as their support networks, and healthcare professionals. These questions were whittled down through a second survey and, following a workshop that was successfully moved online due to COVID, a final top ten was identified. 

JDRF is committed to bringing people with type 1 diabetes to the heart of research and we were proud to be part of this project. As well as providing expertise on type 1 as part of the steering group, a key part of our role was to connect the project with our supporters, enabling them to participate and share their lived experience, concerns or fears.

It was not just questions and concerns that the PSP sought to gather. As well as taking part in the surveys and the final workshop, women with diabetes sat on the steering group and helped set the course of the project itself. Here, women with diabetes were on an equal footing with researchers and healthcare professionals, making sure that the issues that directly affected them were heard and directly influenced the future course of research. 

As part of the steering group we sought to widen participation as much as possible. At JDRF we are working towards more inclusivity in research, and it felt like a solid step forward to successfully engage with the Centre for Black and Minority Ethnic Health to ensure that we included as diverse a range of voices as possible.

The participation and involvement of people with type 1 diabetes in projects like this is critical to help researchers hear and understand what matters to people with type 1 and their support networks. Projects like this give people with type 1 the opportunity to help shape diabetes research – and direct research funding – to the unanswered questions and issues that directly affect them. 

Looking to the future

So, what’s next? 

At JDRF, we’ll be using the recommendations to influence future research and practices. It will inform our conversations on type 1 and pregnancy with healthcare professionals and NHS groups, and support our advocacy work. Last year, JDRF research persuaded the NHS to provide continuous glucose monitoring to all women with type 1 during pregnancy. Work like this requires evidence and insight – something which the PSP now provides.

We’ll also be looking to continue the approach of involving people with type 1 diabetes and their support networks in projects like this as well as more specific research projects – not only to bring their lived experience as participants, but also to involve them in the early stage of project development. 

The PSP put the experience of people affected by diabetes at the forefront of the project, allowing them to set the course of future research – and rightly so. After all, who else do we do research for? 

The Diabetes and Pregnancy Priority Setting Partnership (PSP) was led by the National Perinatal Epidemiology Unit (NPEU) at the Nuffield Department of Population Health, University of Oxford in partnership with the James Lind Alliance, Diabetes UK, JDRF the type 1 diabetes research charity and Diabetes Research and Wellness Foundation.

Read more about the PSP’s top ten research priorities for diabetes in pregnancy 

Read the full paper The top 10 research priorities in diabetes and pregnancy according to women, support networks and healthcare professionals

References

  1. Help prioritise diabetes and pregnancy research, University of Oxford https://www.ox.ac.uk/news/2019-07-02-help-prioritise-diabetes-and-pregnancy-research-1 Last accessed May 2021