Type 1 Diabetes Health Experience Team

Our team aims to embed the experiences of people living with Type 1 Diabetes (T1D) across all aspects of our research. As research partners they are involved in research design, data collection, analysis, co-authoring of publications and are co-investigators on grants.  

Currently our team comprises four young people with T1D, two parents of a person with T1D, and two diabetes educators as well as researchers from across the OHIOH program. The young people have been working closely with OHIOH’s engineers to inform the design of non-invasive sensors to aid the management of diabetes. 

We asked Ellen Brown, Harry Ebbeck, and Lachlan Pedley about their experiences of working with researchers. 

Ellen Brown

Ellen Brown

Name one thing that you have learned working on the team? 

I learnt a lot doing the systematic review as I had never done one before. It was interesting reading the articles and then seeing how the researchers put together the themes into the final paper. 

Do you feel that the researchers listen to you? 

Yes, the researchers listen to me and ask me to explain things from the perspective of someone living with Type 1 Diabetes. I think it is a really good idea that the team included people living with diabetes. 

What do you enjoy most? 

I really enjoy working with the researchers in the other teams. I like that I can contribute to what they are doing. Helping the engineers with the design of a sensor (something that will improve the life of people living with diabetes) was fun. We got to try ones that were already in the market then let them know the features we thought would be best and which ones could be improved. 

What has been the biggest challenge for you? 

Getting involved and contributing to the project. At the beginning of the project I found it a bit boring, but once I got more involved in it and started contributing more, I became more interested and involved in the progression of the project. 

Harry Ebbeck

Harry Ebbeck

Name one thing that you have learned working on the team? 

I have learned that there are teams of people creating devices and sensors that will improve the managing of diabetes in new ways  

Do you feel that the researchers listen to you? 

I think the researchers listen to me and take my knowledge and ideas and implement them in their research. 

What do you enjoy most? 

The thing I’ve enjoyed the most is talking to the device engineers about the device design, and giving my thoughts on the project. 

What has been the biggest challenge for you? 

The biggest challenge is having to use online group calls and not being able to meet the group in person. (Due to COVID 19) 

Lachlan Pedley

Lachlan Pedley

Name one thing that you have learned working on the team? 

Being part of this team has really opened my eyes to all the dynamics and processes involved with academic research. 

Do you feel that the researchers listen to you? 

Absolutely, I always feel as though my opinions are taken on board by the rest of the team. 

What do you enjoy most? 

The thing I enjoy most about working in this team is knowing that by sharing my everyday experiences, I'm helping to improve diabetes management technology and by extension, the quality of life for many other diabetics. 

What has been the biggest challenge for you? 

The most challenging aspect of working on this team has been keeping up to date with everything that is going on with the project!