Education outcomes in young people with diabetes: innovative involvement and governance to support public trust
My academic research is trying to understand how health conditions affect young peoples’ educational outcomes. We also consider how educational settings like schools and universities support young people with chronic conditions to improve their health outcomes. We do this research using large national datasets, and most of our initial work has been on diabetes, as is one of the most common chronic childhood illnesses in the UK, affecting 1 in 250 children, focussing on Type 1 diabetes which is the most common form in childhood. The link between diabetes developed in childhood and education is important because it relates to how well children do at school and what they will go on to achieve academically and into their future careers. In addition, the impact of living with diabetes will affect all aspects of a child’s life, including family, friendships, and their self-esteem.
“I think if they were very clear about how the information was going
to be used and it was a really beneficial reason, I would do it.”
Participant, age 20
In order to undertake this project, there were many challenges around how we gain access to unconsented administrative data. This data may have been collected for administrative purposes, for example, by hospitals or schools, and so the individuals in the data have not given their consent for the data to be used for research. The first challenge is the technical difficulty of ensuring that large and complex datasets are processed and stored securely. The second challenge is to ensure that all of the legal aspects (sometimes known as information governance) are in place, for example, agreeing contracts between all the different parties and ensuring all of the ways we share data satisfy the laws to protect the privacy of the individuals in the datasets. Thirdly, the important challenge for using unconsented data is to incorporate the views and preferences of the individuals represented in the data on the research we are carrying out; this is referred to as “Patient and Public Involvement and Engagement.”
“I think it’s about what sort of data is necessary and what would actually benefit them.”
Participant, age 21
It is recognised by many in the field that this third aspect is resource intensive to do well, and can often be crowded out by other pressures. Due to the difficulty of actively participating with patients and the public, these activities might be done as an afterthought or completed as a tick box exercise to satisfy a data provider or funding panel.
UK Research and Innovation (UKRI), the body that funds academic research in the UK, has set up the DARE UK (Data and Analytics Research Environments UK) programme to consider the infrastructure challenges for analysing large datasets in a secure environment (including technical, legal and involvement). As part of that programme, we spoke to children and young people who were part of our datasets to find out what they thought, not just about the research but also about the information governance and technical solutions being used for their data.
“If there was a way of not identifying it back to me, I’d be more up for it, I think. But definitely
if it was going to come back my details, I would definitely want consent to that.”
Participant, age 20
It sounds like a simple task, but recruiting children and young people to discuss data-sharing has many challenges. How do we get young people to give up their time to talk about something that might not interest them? How do we recruit people to represent the full diversity of the individuals in the data? How can we simplify complex technical and legal issues for children and young people so they can still provide meaningful feedback? To capture our learning on the ‘how’, we have collated and documented the process steps and have produced a toolkit which will be shared across the research community in November, detailing how we involved children and young people in patient and public involvement and engagement.
“It’s strange only finding out now that our data could be used like without us knowing, but it is for good purposes and people can’t just access it like for no reason is for research to improve things.”
Participant, age 20
We organised 19 virtual focus groups with 70 young people from across the UK. In these groups, we discussed a wide range of issues, including their experience of attending school and university while managing their diabetes and what they wanted to see happen to the data held about them. The young people had strong opinions on how they wanted to see their data processed; the findings are outlined in the project report and will be shared as an academic paper.
As someone who deals with the issues surrounding data access every day, an overarching message for me that cuts across all the findings, was that the challenges in using data are not just administrative, legal or technical hurdles to be overcome – they are an important part of ensuring the preferences and demands of the very real people in the data are being met.