Shaping diabetes care for young adults living with Type 1 diabetes

D1 Now is a project that aims to improve outcomes for young adults living with type 1 diabetes (T1D). The project has been running since 2014, during which time we have developed, refined and pilot tested the D1 Now intervention. You can read more about the study at our website www.d1now.ie

Who is involved?

The D1 Now Young Adult Panel (YAP) has been active since 2014. Back then the research team, in collaboration with Jigsaw (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. We ran recruitment for the YAP again in 2018 and 2020 and we currently have eleven members. 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!

The D1 Now Group meeting on zoom in 2020

 Pictured: The D1Now Young Adult Panel meeting virtually in 2020

PPI objectives

That members of the YAP will:

  • Voice their opinion as a young person living with Type 1 Diabetes.
  • Learn about PPI and gain some practical experience of PPI activities.
  • Work together with the research team and other YAP members to shape the D1 Now project.
  • Advise on all relevant aspects of the D1 Now pilot trial, such as recruitment and retention strategies.
  • Contribute to the development of the YAP itself, including revising objectives and advice on recruitment of new members.

Nature of involvement (how they interact, involvement activities) – how does involvement happen?

The YAP have been involved in every aspect of the D1 Now study since the group’s formation in 2014. 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.

Impact

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

  • 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 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 seen on our website https://d1now.ie/blogs/articles · 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.

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.

More information
Contact: Dr Eimear Morrissey, D1 Now Programme Manager - eimear.morrissey@nuigalway.ie

Follow us on Twitter (@d1nowIE) and Instagram (@d1nowyap).

Website: www.d1now.ie