Experts by Experience
Within BDB we are building a physical library of people with lived experience to ensure their voice is heard to create the changes that we want to see in services everywhere.
We hold regular PPI group meetings with people from all over the UK from different backgrounds, ages and with differing lived experiences regarding health conditions and genetic diseases.
We have currently started the Diversity in Diabetes Young Person’s Advisory Group to develop an action plan that families feel comfortable with and that will support them to manage their diabetes, exploring what needs to change so that it is accessible for everyone.
This study is in partnership with Diabetes UK and funded by the NIHR.
The panel is currently made up of 5 members from different parts of the UK that are aged between 18 -21. The first session went well, and the group seemed to feel very comfortable focusing on clarifying the group terms of reference (ToR) sharing their thoughts and views which was minute to capture the conversations had. We will be expanding to create another group for younger people as our target audience is between ages 11-25. We also hope to involve the voices of those with lived experience, their families, and diabetes staff.
The second panel is a part of the BDB network with a range of different voices that come together regularly to discuss health inequalities or discussion topics to help engagement in healthcare services. This group includes those from diverse backgrounds with lived experience, rare genetic conditions, health professionals etc… The first session went amazingly, the topics of conversation were so in depth, and it could have gone on for a longer period as there was so much that was discussed naturally through conversation. This panel at the moment has 3 members and we will be trying to expand this as much as possible, with a possibility of creating another panel dependant on ages and timings for those that would like to attend.
We will plan to expand our Experts by Experience PPI group so that we have a diverse group of people with a range of different skills and experience. The group will help shape our work moving forward and will be a useful resource for the BDB network. Our hope is that this group can also help support future research and policy developments and elevate the voices and experiences of people from diverse and marginalised communities.