YAP members have been involved in every aspect of the D1 Now study since the groups formation in 2014. The YAP members meet approximately once a month and communicate between meetings via a private Facebook group, emails, WhatsApp and a shared Google Drive folder. Two members of the YAP are also members of the study’s Steering Committee.
YAP members have conducted research tasks such as developing the topic guides used in qualitative research as well as participant invitation letters, consent forms and information sheets. They have contributed to questionnaire design and the interpretation of both qualitative and quantitative results. As part of the pilot trial of D1 Now in 2020, they designed a Study Within A Trial (SWAT) investigating if a branded gift and letter from a Public and Patient Involvement (PPI) group would enhance questionnaire response rate in a randomised trial. The branded gift chosen by the YAP was a smartphone pop-socket, and this SWAT was accepted to the Northern Ireland Network for Trials Methodology Research SWAT Repository. They have contributed significantly to dissemination of the study findings including entering the YAP in competitions, submitting abstracts to national and international conferences and being invited speakers at several national conferences, including one focusing on Public and Patient Involvement organised by HRB Primary Care Clinical Trials Network Ireland.
The YAP have produced a consistent and high level of research since their inception and their contribution to the field of diabetes research has been remarkable. One example of such is Strength in Numbers international conference in NUI Galway in 2016 which was organised and run by the YAP. Over the course of three days, the diverse international group of attendees agreed on a core outcome set for clinical trials of interventions for young adults with T1D, 3 key parts of the D1 Now intervention and a health technology solution. Other contributions to the field include co-authorship on 5 peer reviewed and well-cited publications and acting as collaborators on the successful Health Research Board application which is funding the current work.
The YAP have also played an important role in shifting the culture of traditional health research to one that is inclusive of the patient voice. Having been in place since 2014, they are one of Ireland’s longest standing and well-known PPI panels, providing an exemplary example of the motto ‘Nothing about us, without us’.
YAP members describe their motivations for getting involved in this work, as well as their personal highlights in the video below.