PPI Ignite network
Improving outcomes 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 on our website .
The D1 Now Young Adult Panel (YAP) has been active since 2014. Back then the research team at NUI Galway, 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 nine 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 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.
The members of the YAP had plans to:
- 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
- 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.
- 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
- 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 D1 Now study focuses on young adults between 18-25 years. The YAP has been in place since 2014, so as time passed YAP members began to ‘age out’ of this group. Some members were happy to leave the YAP having given enormous contributions during their time on the panel. Others were keen to stay involved and keep using the PPI skills they had learned throughout the project. Through discussion we decided that it would be beneficial for interested members to stay on but there was a need for fresh voices and younger people to get involved too. With this decision made, we ran two rounds of recruitment to the YAP – one in 2018 and one in 2020. The YAP gave ideas around recruitment strategies, contributed to the design of the recruitment posters and set up the Instagram page to reach potential new members. This has worked out well, and we now have YAP members since 2014, 2018 and 2020. The experienced members provide continuity and can give guidance and support to the newer members. New members can learn from the experienced members but also bring different voices and perspectives to the table.
The research team are based at NUI Galway, led by Prof Sean Dinneen.
D1now study: follow us on Twitter (@d1nowIE) and Instagram (@d1nowyap).
The YAP starred in ‘The Patient Effect documentary.
Name: Dr Eimear Morrissey
I got involved with the D1 Now YAP 6.5 years ago in the hopes of providing an insight into what I had experienced in T1 healthcare in Ireland. Since then the YAP has been empowered to become such a crucial element to our research project as well as setting a national and international standard of best practice. My motivation for staying involved for this long has always been to improve health care services for young people living with Type 1 diabetes. I’ve know what it’s like to feel powerless in a clinic, and I’m dedicated to ensuring that no other young person feels like that.
Cameron, YAP member since 2014
I joined with the hope of being able to contribute positively to the group and its research through reflecting on my own experiences and personal challenges as a young person with T1D. Knowing what we go through as young adults with T1D, it is very rewarding to know that we are directly impacting and improving patient experiences however big or small that might be for some.
Diarmuid, YAP member since 2019