TREvolution Public Advisory Group member, Rachel Hill, shares her reflections after a recent meeting of the Public Advisory Group in Nottingham.
TREvolution events are so good at addressing what I, as a public member, desire, and there was ample time given to our needs. With so many valuable insights and observations from the day, I will choose a few of my highlights here, where being face-to-face with expert technical staff and senior decision makers provided the perfect opportunity for full and meaningful discussions.
As wished, there were plenty of discussions around the most pressing questions about decisions for ‘public good’, ethics guidelines and our desire to know what data is being used for, given the lack of public trust in current information.
It was so useful in revisiting often-confused basic facts, such as the difference between sharing data for healthcare purposes and for research.
An important key action coming out of the day was an idea to develop an infographic that gives an overview of TREvolution, as I really appreciate visual explanations and feel this will be clearer for a wider public audience, too. Indeed, efforts were always made to explain difficult concepts visually and verbally, making them as accessible as possible. If not, I was able to question, as always, without fear of being seen as ‘stupid’!
We also worked on different ways of communicating to broaden engagement, given the diverse needs we all have.
I love the knowledge that Collaboration Cafés bring, and here we addressed the questions that the public is asking about who is accountable for a data breach in a federated system. Perhaps not a clear-cut answer given, but we have further opportunity to ensure that we receive a full response.
I am most pleased to keep high on the agenda. The public’s always having a say in whether research is in the public interest, with public members of TREs having the final say on public benefit tests. Worth highlighting was the emphasis placed on ensuring public voices remain part of the conversation when data is used in research, and I appreciated the opportunity to speak with researchers and clinicians to gain a better understanding.
The event certainly met and exceeded my expectations, and it was inspiring to see the value the TREvolution staff placed on our involvement. Their commitment to improving public representation and, in turn, outcomes for patients is exemplary. These events provide a great opportunity for collaborative learning, with time well used, and in-person attendance is always appreciated, providing a more personal experience. Interesting and enlightening as all my work with TREvolution has been, I look forward to our next meeting for sure!
