The challenge of explaining what we do and the importance of public involvement
I have spent the last eight years of my career at Decoded, working with some of the world’s largest organisations to educate their leaders about the transformative power of data and advanced analytics. When the opportunity arose to be involved with Health Data Research UK in February 2020 as a public contributor, I felt I had finally got the opportunity to put my money where my mouth was.
The role of a Public Contributor is to act as the voice of the wider public in all matters. It is also to support with explaining and communicating complex ideas effectively to the public using non-technical language where appropriate.
From the start of my involvement, I had a fascination with trusted research environments (TREs) and their power to allow advanced analytics to be carried out in a secure and privacy-protecting way. I also discovered our greatest challenge… Explaining what a TRE actually is!
I come from a technical background: my job involves explaining complicated technologies in an easy-to-understand way, and I really struggled to get my head around what we were talking about and why these things were considered such a good idea. It took me about eight weeks of asking questions and having discussions with technical experts before I felt comfortable explaining what a TRE is to a public audience.
As ever, with complicated technologies that are difficult to explain to the public, there can be a temptation not to bother. This is a dangerous route to go down and one I am very pleased to say that DARE UK are actively avoiding. This is partly by recruiting a team of passionate and experienced public contributors (of which I am proud to be one), and partly through a commitment to a full and thorough programme of public involvement and engagement.
I am excited by the challenge and look forward to working with the rest of the team to help us communicate these complex but important ideas effectively to the wider public. Through this programme we aim to involve and educate the public as to the benefits of TREs, whilst also listening to their concerns and ensuring that voice is represented in DARE UK’s work.