Formation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now study

Abstract

Plain English summaryMany young adults with type 1 diabetes (T1D) find it hard to control their blood glucose levels. With lots of things going on in their lives, their diabetes is often not the most important thing to them. That means they do not always take care of their T1D, for example by going to clinic appointments. Young adults with T1D do not usually get the chance to make suggestions on how to improve diabetes services. Being involved could help young adults to shape the diabetes care services that support them. Since 2014 a diabetes research team based in Galway has been looking at ways to improve how diabetes services are delivered to young adults. Eight young adults (aged 18-25 years) with T1D called the Young Adult Panel (YAP) are members of this team and have helped design the "D1 Now" intervention which aims to improve diabetes services. The YAP came up with questions to ask other young adults with T1D, their families and friends and healthcare providers about their experiences of healthcare services and how these could be improved. The YAP also shared messages from the research at national conferences and on local radio. They helped with writing sections of a grant application to take this research work forward. Our experience has shown the importance of involving young adults with T1D in helping to design research focusing on ways to improve their diabetes service that will help them and other young adults to live with diabetes in the future. O'Hara et al. Research Involvement and Engagement (2017) 3:21 DOI 10.1186/s40900-017-0068-9(Continued from previous page) Abstract Background Research indicates that young adults (18-25 year olds) with type 1 diabetes (T1D) often disengage from health services and their general diabetes management. Involving young adults with T1D in co-designing research to develop a behaviour change intervention to improve engagement with health services could potentially improve overall self management and health. A local youth mental health organisation called Jigsaw, Galway developed a very successful model for involving users in service design and development. Based on this model, the aim was to form a Young Adult Panel (YAP) of 18-25 year olds with T1D and involve them in all aspects of a study to develop an intervention to improve health and wellbeing for young adults with T1D called D1 Now.Methods Recruitment of young adults was achieved through a multimedia campaign. A consultation event was organised, followed by interviews with interested young adults. A panel of 8 members was selected. Following initial training for YAP members in committee skills and an introduction to different research methods and terms, YAP members participated in different stages of the research process. They were represented on the research study steering group and attended research meetings. They developed research materials, reviewed and interpreted research findings and helped develop the online platform to enhance engagement between young adults and their diabetes healthcare providers....

The preferences of young adults with Type 1 diabetes at clinics using a discrete choice experiment approach: the D1 Now Study

“…This study will add to the evidence of how clinics should be restructured to be more responsive to the needs of this population and will inform the on‐going intervention that the D1 Now Study team are currently developing and evaluating. The findings will contribute to a multifaceted development approach to user‐centred development . Such development work has helped to inform core components of the D1 Now intervention.…”

Laying the groundwork: Building relationships for public and patient involvement in pre‐clinical paediatric research

“…Furthermore, we have been contacted by biomedical researchers and patient advocates from other disease areas for advice, which was a major catalyst for publishing the approach we used. We are now in the early stage of developing researcher training and evidence‐based approaches to public involvement of young people in biomedical research across all disciplines in association with the National Children's Research Centre.…”

Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

“…The D1 Now study team has demonstrated that it is both feasible and desirable to include a PPI panel of young adults with T1D in health research 27,29 .…”

“…Full details of the process of the formation of the YAP are published elsewhere 27 . The panel consisted of 8 young people aged between 18 and 25 years living with T1D who volunteered as co-researchers with the study team.…”