D1 Now is a project that aims to improve outcomes for young adults living with type 1 diabetes (T1D).

The D1 Now project established a Young Adult Panel (YAP) in 2014. The research team, in collaboration with Jigsaw (the National Centre for Youth Mental Health), invited young adults to an open consultation event. Letters were sent to young adults aged between 18-25 years old attending the diabetes service in Galway in conjunction with a social media campaign using Twitter and Facebook. This letter asked young adults to attend the consultation event in Jigsaw if they were interested in getting involved as co-researchers with the D1 Now Study team. It explained that research carried out would be ‘with’ and ‘by’ members of the YAP rather than ‘to’, ‘about’ and ‘for’ them.

Eight young adults went on to form the initial YAP. Since then, some of these young adults have moved on, having given huge contributions during their time. The research team ran recruitment for the YAP again in 2018 and in 2020 and the YAP currently has nine members. The work of the YAP is ongoing.

The YAP have been involved in every aspect of the D1 Now study since the group’s formation in 2014. The YAP started off with a Galway base however due to the advances in technology, we now conduct meetings over Zoom and have members from all over the country! 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.

The impact the YAP has had on the D1 Now study has been immense. Some examples include –

  • The YAP organised the Strength in Numbers conference in 2016. This was an international conference on the topic of young adult diabetes care. Over the course of three days, the diverse group of attendees including researchers, health professionals, people living with T1D and policy makers took part in a hackathon and agreed on a core outcome set for clinical trials of interventions for young adults with T1D.
  • Refinement of the D1 Now intervention through contribution to the research team’s qualitative research. This involved creation of interview guides, co-facilitating focus groups and engaging with the data analysis. This resulted in the D1 Now intervention being well tailored to a young adult Irish population before going to pilot randomized controlled trial (RCT).
  • The YAP strongly advocated for the role of a ‘Support Worker’ as part of the D1 Now intervention. They then drew up the job spec for this role and one member sat on the interview panel for the role. We recently completed a pilot RCT of the D1 Now intervention, and the qualitative work shows that this component was highly valued by young adult participants.
  • Contributing to all aspects of the pilot trial of the D1 Now intervention. This involved co-designing questionnaires so they could be easily understood by participants and working with the Support Worker to create resources for young adults with T1D. Some of these resources can be viewed at https://d1now.ie/blogs/articles
  • As part of the pilot trial of D1 Nowin 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.

The major contribution that the YAP made to our work is that the D1 Now intervention is not a traditional clinic-based intervention designed by academics and clinicians, but rather has the young adult voice to the fore. The preliminary results from our pilot RCT have been positive, with one young adult participant saying “To be honest, there wasn’t anything I didn’t find useful about it. To be honest, I wouldn’t change it, I liked every bit.” There is no doubt but that these positive results are due to the YAP’s involvement throughout the design process.

The YAP starred in ‘The Patient Effect’ documentary.