By Jacq Miller,
At the start of the meeting we agreed the ‘shared agreements’ (ground rules) we’ve been working on since the previous meeting. Then Jasmine and Rhianne talked about the online iCAN conference that they attended and explained how it worked and how they had met young people from all around the world involved in health research. Then Elena and Orla told us about a recent Centre for Coproduction meeting they went to online with Louca-Mai and Jacq, to talk about our Zoom meetings. Here’s the blog post they wrote about this: https://generationr.org.uk/virtualcopro/
Moving on, we talked about the previous meeting; what we enjoyed, what we understood and what content we liked. We also talked about what we thought could be changed and we all agreed that, while we liked having shorter meetings on Zoom, we wanted a longer break, so that was included in this meeting.
Then we talked to Jo, James and Helen from the Moorfields Biomedical Research Centre about big data and the project they’re working on called INSIGHT. In our last meeting we’d talked to them about how ALICE the robot might learn about cats from big data. This is what they said about what we did in the session:
“Previously, we introduced the group to the concept of machine learning through ALICE, a robot that uses data to learn to recognise things. This time, we wanted to hear the YPAG’s thoughts on INSIGHT – a project to share anonymised eye data for health research, with the aim of improving patient care through tools like machine learning.
We explored how INSIGHT works by splitting the into three teams: ‘data controllers’ (who manage the data held by INSIGHT) and two sets of data borrowers (from a university and a tech company). The ‘borrowers’ were asked to persuade the ‘controllers’ to let them use the data. After presenting their cases, we voted on both requests: the researchers got the green light, but the tech company was refused. We then explored some of questions raised, including anonymisation and who benefits (as one YPAG member pointed out, ‘a tech company is just a business at the end of the day’). We also asked how the group would feel about sharing their data, and where they would look for information to help them make up their minds”
We talked about how important it was to protect and anonymise people’s data. Here are some of the questions we asked both companies :
James, Jo and Helen said:
“When it comes to exploring ideas and sharing their thoughts, the YPAG members are smart, articulate and enthusiastic. Their input will help us communicate more effectively about the use of health data in research – not just with young people, but with the public as a whole”.
After the break, Dipesh and Lucy talked to us about the research that they are doing, helping children who are having patching treatment for a ‘lazy eye’. We have them advice on the information they will give children aged 4-7 about their research (the patient information sheets) and the questions they will ask in interviews. We asked what questions the researchers were going to ask to get children involved and we came up with ideas and suggestions to improve them, including using puppets and other creative ways to make the interviews fun!
Then we all said goodbye as we’ll be back (still on Zoom at least for now) after the summer break.