‘Lived experience’ and ‘co-design’ aren’t just the latest buzz words – they are now a ‘must have’ in using consumer voice to design effective, equitable and accessible healthcare.
“The patients themselves can be the best source of information,” says Lisa Blake, Improvement Advisor - Co Design.
A Child, Youth and Maternity project team tell us how they are utilising consumer voice and engagement to design a new model of care, aimed at supporting children born to mothers with Type Two Diabetes Mellitus (T2DM) / Gestational Diabetes Mellitus (GDM).
Around one in six pregnancies are complicated by either existing diabetes, or diabetes in pregnancy (T2DM/GDM).
Jacob Morton-Jones, Paediatric Dietitian and Project Lead, says that while diabetes complicates the pregnancy itself, after birth - both the mothers and children have an increased risk of adverse metabolic health, development, and well-being outcomes.
“Early intervention may reduce these risks, decreasing the burden of disease for these children throughout their lifetime. “
The team explain they knew it was important to hear from people who had been through Diabetes in Pregnancy service and use their ‘lived experience’ to find out where care and support should be targeted to achieve equitable outcomes.
“We may be experts in our own fields, but we aren’t experts in what is happening in people’s homes,” says Jacob.
Lisa says the community voice was very informative.
“We interviewed and collaborated with 18 mothers who had diabetes in pregnancy, one dad, and 10 staff, including Well Child providers.
“Our feedback showed the Pregnancy and Diabetes service at Manukau Health Park was well regarded but there was no continued support following this.
“Through this korero the consumers said they felt heard and felt it was nice to know they weren’t alone”.
Jacob tells us that finding that gap in the follow-up care of children born to mothers with T2DM or GDM, was game changing.
“Bridging this gap could help achieve better outcomes for children and whaanau affected by diabetes in pregnancy, and we were able to secure funding to deliver this new model of care,” he says.
“Without lived experience feedback, you could just assume that something is a health literacy problem, and that patients don’t understand their condition - but if you take a deeper look and listen to the people with lived experience, often you can unlock the real reason and use that to provide a solution that can work better,” says Lisa
This ‘Lived Experience’ study is currently being reviewed by the project Steering Committee and awaiting recommendations that will inform a new model of care for infants, mothers and whaanau affected by diabetes in pregnancy.
Team members: Jacob Morton-Jones, Paediatric Dietitian – Project Clinical Lead and Lisa Blake, Improvement Advisor – Co-Design, (pictured above) and Jennifer Brenton-Peters, Weight Management Programme Manager, Siniva Sinclair, Population Health Physician, Charlotte Oyston, Obstetrician, Sally Ikinofo, Contractor Whaanau and Eva Takinui, Project Manager. (not pictured)
