‘Strength In Numbers: Teaming up to improve the health of young adults with type 1 diabetes’
By Lisa Hynes
Postdoc researcher, Health Behaviour Change Research Group & D1 now study group
What do you know about type 1 diabetes??
If you were asked to talk for 2 minutes straight about type 1 diabetes, would you be able? Many people would not be able to talk about type 1 diabetes, confidently, for more than 10 seconds, but this complex chronic condition affects the lives of 14,000-16,000 people in Ireland (Diabetes Ireland, 2016). Type 1 diabetes is an auto-immune condition which destroys insulin-producing cells in the pancreas. It is typically diagnosed during childhood or adolescence and the prevalence of this condition is on the rise worldwide.
People living with type 1 diabetes must engage in a complicated and demanding routine of self-management every day, including self-monitoring their blood sugar levels and matching insulin doses to the carbohydrate content of everything they eat. Life with type 1 diabetes can become even more demanding during young adulthood as young people with the condition move out of the family home, start university and work, experience changes close their relationships, travel and generally become independent. Young adults with type 1 diabetes can and do live the same active lifestyles as their peers with diabetes but the stakes are higher when it comes to monitoring and maintaining their health. Many people don’t understand what it’s like to live with type 1 diabetes, or any chronic condition and so young people may feel isolated and unsupported at this time.
In recent research we have found that the needs of young adults, including diabetes education and support which is age appropriate, are not being met by existing diabetes services. We have also found that service providers and researchers aren’t sure how best to meet the needs of young adults with type 1 diabetes to improve their wellbeing and quality of life.
The D1 now Study group
So how can we address this mismatch between diabetes services and the needs of young adults with type 1 diabetes? The D1now study group, led by Prof Sean Dinneen and based in NUI, Galway and Galway University Hospitals, are teaming up with stakeholders in young adults type 1 diabetes management to find out what young adults want and how we can deliver a better diabetes service. The D1now study group was set up over two years ago and includes a panel of 8 young adults aged between 18 and 25 with type 1 diabetes, service providers and researchers, working together to improve the health of young adults. Over the last 2 years the team has gathered different kinds of evidence by searching research already conducted around the world, and interviewing young adults, service providers and parents around Ireland, to get an in-depth understanding of life for young adults with type 1 diabetes. NUI Galway will host a three-day international symposium from the 22nd – 24th June to help us take what we’ve learned and translate it into a new way of working with young adults with type 1 diabetes.
Agreeing on core outcomes
On the first day, Dr Molly Byrne, who leads the Health Behaviour Change Research Group and is a HRB Research Leader in the School of Psychology in NUI Galway, will bring together researchers, young adults with type 1 diabetes and service providers to agree on a Core Outcome Set. A Core Outcome Set is a standardised set of outcomes, which may include important factors like quality of life and control of diabetes, for use in future research with young adults with type 1 diabetes. Core Outcome Sets make it easier to compare and build on research into a topic area and will contribute to the quality of future research with young adults with type 1 diabetes.
The main event
At the centre of this three-day event will be an international expert conference ‘Strength In Numbers: Teaming up to improve the health of young adult with type 1 diabetes’ on Thursday, 23rd of June. Healthcare professionals, young adults with type 1 diabetes, researchers and policy makers are invited and encouraged to attend this free conference, which is funded by the Health Research Board through a Knowledge Exchange and Dissemination Scheme.
Headed by Professor Seán Dinneen, Consultant Physician at Galway University Hospitals and Head of NUI Galway’s School of Medicine, the conference will see national and international experts presenting to a multi-disciplinary audience on service provision and technology for supporting self-management in young adults with type 1 diabetes. The conference will host an array of international speakers from the Steno Diabetes Center in Denmark, the University of Sheffield, Kings College London, Cardiff University, the University of Aberdeen and Diabetes UK, as well as a host of national healthcare providers and experts from the HSE and Irish universities.
The final day will involve two parallel sessions: an ‘Expert Panel’ and a ‘Hackathon’. The Expert Panel will be focused, and people will be specifically chosen to attend based on their skills and experience. This panel meeting will involve discussion and feedback sessions develop ideas for an intervention to improve health outcomes for young adults with type 1 diabetes in Ireland. The Hackathon will bring together software developers, engineers and designers, with people with type 1 diabetes and healthcare professionals, to identify technology solutions to better support young adults with type 1 diabetes.
The ‘Strength In Numbers’ conference on the Thursday, 23rd of June, is open to anyone with an interest in young adult type 1 diabetes management. This innovative, multi-disciplinary conference is not an information event for people with diabetes but will be of interest to health services providers, researchers, young adults with type 1 diabetes and policy-makers. Join the Strength In Numbers conversation using the #TIDSINs2016!
For full programme details or to register for free visit http://www.conference.ie/Conferences/index.asp?Conference=467. For further information contact Dr Lisa Hynes in NUI Galway’s School of Psychology on 091 494458