Patient and Public Involvement

How Public Involvement Informed and Guided the EDDY Study

Stephen Thomas, Sarah Earle-Jones and Julia Townson were asked to present the Early Detection of type 1 Diabetes in Youth (EDDY) study at the Health and Care Research Wales Involving People Network meeting on 1 February 2016. The aim of the presentation was to show how Involving People network members had been involved with researchers and how public involvement had influenced the project. The aim of the presentation was to deliver it as a conversation, similar to a question and answer panel. The text below is a sample of what was delivered on the day. On the day Sarah was unable to attend, but sent comments that we have included below. Stephen acted as Chair and directed questions to Julia. This is a particularly important example of working with the public during a study because the idea and inspiration for the intervention came directly from public involvement.

Stephen: Good afternoon my name is Stephen Thomas.  I was one of the parents invited to become involved in a study about interventions to raise awareness of type one diabetes in children and young adults.  I would like to introduce you to Julia who was one of the co-applicants on the EDDY study and perhaps I can start by asking you to give a brief outline the project and why it is important.

Julia:  It is important because, although quite rare, type one diabetes in childhood, if not detected can be very dangerous and can lead to fatality.  Therefore, we felt it was important to carry out a study which developed and delivered interventions to both GPs and parents, in order to raise awareness of the symptoms.

Stephen: So Julia you brought us on board as parents to look at the intervention in schools.  Some of us were parents with children with diabetes and some, like myself, were fortunate enough not to have children with type one diabetes.  Why did you feel that it was important that you had that mix?

Julia: Parents with children with type 1 diabetes are well aware of the symptoms.  Therefore, it was important to canvas the opinions of those without to ensure the intervention had the most chance of success.

Stephen:  So Julia you brought us together for a number of meetings to design the intervention.  Did it go as you expected?

Julia:  Well, in some ways yes and in some ways no. Yes, I was confident that parents would be able to design something, we were thinking a fridge magnet, that sort of thing, but what they came up with exceeded our expectations! The shopping bag was such a fantastic idea.

Stephen: What about you Sarah, what were your expectations?

Sarah: I had none! I arrived at the first meeting with some trepidation but I think to be honest that we all felt like that. By the end of the meeting I was excited by the task entrusted to us and felt quite passionately about the need to get information ‘out there’, to increase awareness of type 1 diabetes. I was shocked by the stories relayed to us by the other group members who were parents of children with type 1 diabetes.

Julia: What about your expectations Stephen?

Stephen:  I guess, initially, I didn’t have much in the way of expectations only that I was enthusiastic about taking part as although my daughter is not a diabetic my mother had type 1 diabetes.  However, I was very pleased with the way that you set us up as a panel as we were there from the beginning and although you had ideas about the type of interventions, you were very open to our input.

Julia: Yes, we wanted as much of your input as possible.  How did you think that your input changed things?

Stephen: We had a number of important conversations about the best way to raise awareness in a condition that is thankfully relatively rare.  In fact, if I can pause for a moment and just ask for a show of hands.  How many people in this audience know how to check for symptoms for meningitis?  The glass test.  The occurrences of type 1 diabetes and meningitis in children in the UK are very similar.  How many people in this room, before you saw it on the slide behind me knew the symptoms of type 1 diabetes? Yes, less than for meningitis.  Therefore, we felt, as a group, it was important to get the message across in a way that wasn’t a single intervention which got lost but rather in the form of perhaps an everyday item so therefore, along with the leaflets and messages that were going into GPs we decided that using a bag, as with the 5p charge people are saving bags, would be an effective way of doing it.

Stephen: Sarah what did you think about your  input?

Sarah: I too was impressed by the level of input that we were given and that our contributions were both valued and valid. It was an exciting project to be a part of and I feel a splash of pride when I notice the blue bags ‘popping up’ as I’m out and about!

Image by Matthew Horwood. Courtesy of Health and Care Research Wales.