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

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 allaspectsofastudytodevelopan 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. They contributed to an international consensus conference on health services delivery for young adults with T1D and wrote specific sections of a further grant application to test out the new intervention. Results As a direct result of the YAP, a meaningful dialogue has opened up between healthcare providers and young adults within the D1 Now research team. Their involvement has led to a better understanding of what needs to be achieved in order to improve health service delivery. They have been active members in co-designing a health behaviour change intervention to improve engagement between young adults with T1D and healthcare providers which will be evaluated in future research. Conclusion Through the formation of the YAP, we have demonstrated that involving young adults with T1D in healthcare research is feasible and productive.