Experiences of Patient Involvement in the Development of an Intervention for Young Adults with T1D: The D1 Now Study

Previous Knowledge of Public/ Patient Involvement

While working as Project Manager on the HRB-funded Irish DAFNE cluster randomised controlled trial, I began to realise the potential benefits of including and involving service-users in health services research. At the time (2011-2013) Professor Simon Heller’s DAFNE Clinical and Research Group had started engaging DAFNE graduates to be members of the study’s steering group. The research team quickly discovered the merit of fully involving people in the research process and more formal training and recruitment strategies were employed.

Seeking Funding 

When we started putting together our Health Research Award to establish an evidence base and develop a protocol for an intervention to improve outcomes for young adults with type 1 diabetes we were determined to involve young adults themselves in co-designing and co-developing the research with us. We invited Liam McMorrow, a young adult living with type 1 diabetes who was attending our service to be a Collaborator on the research application and to oversee the aims, objective, research strategy and dissemination and knowledge exchange plan. Liam and the research team quickly identified some weaknesses in the application. Dr Molly Byrne (Co-application), Health Behaviour Change Research Group, NUI Galway put us in touch with John Fitzmaurice and Sarah Simkin from Jigsaw, Galway. This proved to be one of the most important and valuable collaborations I have ever been involved with. Jigsaw is a community-based outreach service for young adults with early and emerging mental health problems. Jigsaw involves its service-users in all aspects of its service design, development, management, communications and overall evolution. The first thing our research team did when we were successfully funded was to collaborate closely with Jigsaw to form a Young Adult Panel (YAP) of young adult service-users living with type 1 diabetes to work with the research team based in the NUI Galway and Galway University Hospitals (GUH) campuses.

Forming our Young Adult Panel

Áine Cunningham, Diabetes Nurse Specialist, selected 3 young adults with type 1 diabetes attending GUH who she thought may be interested and enthusiastic about the possibility of being involved in research. Sarah Simkin (Jigsaw) and I arranged to meet these young adults, we fully explained what we would like to do and asked for suggestions of how we should proceed. The young adults thought that an open consultation event should be organised. They penned a general letter to young adults with type 1 diabetes asking them 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. Letters were sent to young adults aged between 18-25 years old attending our service in conjunction with a social media campaign using Twitter and Facebook. At the consultation event young adults were asked to brainstorm about ideas to improve services in small groups as an example of how they might be involved. At the end of the evening, those who were interested in becoming YAP members were asked to sign an expression of interest form and were followed up with an interview to make sure they were fully aware of the commitment involved and to see if there was anything we could do for them. Eventually eight young adults were invited to become members of the YAP. Terms of reference and general group rules were debated and agreed at the first meeting. During the summer of 2014 YAP members received training in research terminology, methods, qualitative methods, committee skills, public speaking and PowerPoint.

YAP Involvement

Since 2014 there have been no aspects of the study that YAP members have not been involved in. The YAP members meet approximately once a month or more frequently if required. They communicate via a private Facebook group and also using emails, Whatsapp and text messages. Meeting are scheduled democratically using Doodle. Two members of the YAP are also members of the study’s Steering Committee and two members sit on the study’s Knowledge Exchange and Dissemination Group. YAP members developed the topic guides used in the qualitative engagement study with key stakeholders.  This involved a topic guide to be used in focus groups with young adults with type 1 diabetes in Galway, Dublin and Belfast, a topic guide for interviews with diabetes healthcare professionals and a topic guide for interviews with friends/ family of young adults with type 1 diabetes. They developed the participant invitation letters, consent forms and information sheets. 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 2 national conferences, including one focusing on Public/ Patient Involvement organised by HRB Primary Care Clinical Trials Network Ireland. They have helped the research team interpret the findings of a systematic review that has been accepted for publication in Diabetic Medicine. They have also been interviewed for local newspapers and radio. YAP members helped with the organisation of our international young adult type 1 diabetes consensus conference in June 2016 called Strength in Numbers (#T1DSINs2016). The D1 now team have recently submitted an application to the HRB Definitive Intervention and Feasibility Award and the YAP members significantly contributed to various sections of the grant application including sections on SWAT, PPI, dissemination and lay summary. If successfully funded the team plans on developing the D1 now intervention, testing it in a feasibility study before conducting a randomised pilot study. The study will be greatly enhanced and will be more impactful by our continued collaboration with our YAP members. If funded, the team would look to establish more YAPs in Dublin and Belfast.

The Researcher’s Perspective

As a Project Manager and researcher I found the experience of forming the YAP and involving these young adults in the research invaluable. I am the main point of contact between YAP members and the rest of the research team and sometimes I have to pinch myself at how willing and insightful the YAP members are; all their work is voluntary! They give their time and energy when they can. Their involvement has to be seen to be believed. They grasp what we are trying to do so well and are so good at coming up with ideas and solutions. They listen to us and to each other. They are conscious that they are only eight people so they know they are not representative of all young adults but they take the fact that their voice as young adults is really being listened to through this forum very seriously. I am grateful for the experience of getting to know and understand all the YAP members and I am honoured that they continue to be involved in this important work. I know that funding agencies are asking for PPI in applications as a requirement now but after my experiences of the YAP I would plan on using more PPI approaches in the future anyway. The only negative I have to report is the logistics of trying to get meeting times that suit the majority but this is true of other Co-applicants and Collaborators involved in the study too.

The YAP Member’s Perspective

My name is Ciara Keighron and I am member of the type 1 diabetes D1 now study Young Adult Panel (YAP) along with seven other young adults based around Ireland. I am 22 years old, I was diagnosed with type 1 diabetes when I was 8 years old. I am currently working in the Societies Office in NUI Galway and I’m a recent graduate in Biotechnology. Two years ago the YAP members were strangers and now we are a close knit group striving to change the health outcomes for other young adults living with diabetes. When I joined the YAP I had very little experience with research or very little idea what, I, myself could contribute. I, and the other members of the YAP, learned that not only could we enrich the output of this research group but we could make real tangible change for our age group and ourselves. I suppose the predominate reason for my involvement in the beginning was curiosity but that soon turned into motivation. Motivation to keep the dialogue between health care professionals and young adults going, to gain new skills, to share my experiences with diabetes management but, most importantly, motivation to be heard and hopefully change the way care is delivered to young adults with type 1 diabetes in Ireland.

Our involvement to date has led to the personal and professional development of the YAP members, as well as landmark developments in the way type 1 diabetes could be managed in young adulthood by looking at the broader picture of who the individual is. The YAP as a whole brought the personal side to this research, we became the faces of the statistics but also the potential source of the solution. It is often hard to articulate what the YAP has gotten out of this project because none of us became involved to get something out it. The process has been so rewarding in terms of experiences and we are all as committed as we were in the beginning; we still strive to be the tangible force of change for our age group. Two years ago none of us would have been able to imagine the position that we are currently in, where patient involvement in research has become even more prevalent in good quality research. Service-user experiences really can define and change the future of healthcare in Ireland and beyond.

We, the YAP, have become the change that our generation of young adults living with type 1 diabetes needs.

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