A global collaboration based in Edinburgh is tackling the fact that many children and young people across the world are “data invisibles”.
The conference heard about the Data for Children collaboration with Unicef, a three-party project also involving the Scottish Government and the University of Edinburgh.
“This is important, not just for Scotland, but the world,” said Stefan Verhulst, chair of the project. “Children are another section of the population not often accounted for or properly understood in terms of data. We do not have granular data relating to children. It’s not just about making children visible but also how to understand the impact of the interventions we make.”
Lucinda Rivers, head of Unicef in Scotland, said there was not enough data to meet the UN’s Sustainable Development Goals target: “We lack data and that matters because every single day, 2,000 children die from preventable diseases. Some of those children are invisible – we don’t know where they are. Our mandate is to help every child to survive and thrive and we need to find them and prevent these things happening.”
The same principle applies in Scotland, said Roger Halliday, chief statistician and data officer at the Scottish Government. “The National Performance Framework aims to allow children to grow up safe and loved and set them up to succeed in the future,” he said. “Without high-quality data shared between organisations, that’s not going to happen. We need to be able to prevent bad outcomes and promote equalities.”
Halliday said the Scottish Government had calculated that organising its data correctly could deliver around £1 billion of public sector savings annually and put around £3.8bn into the economy, attracting “high-quality, well-paid jobs that can help save people time and money – and save lives.”
Dr Mahmood Adil, medical director of the Information Services Division, NHS National Services Scotland, said: “If we touch children’s lives, we touch the whole family.” He said Scotland had tremendous opportunities to draw on the enormous amount of data available, and its power, “to identify factors that lead to obesity and to look at interventions”.
He added: “We can see data as an asset, a common good, and with a larger pool of data, you can do great things.”
Obesity is one early focus of the project and Rivers said there were almost 50 million children globally who were classed as obese.
Verhulst added: “There are risks about using data but there are also risks in not using data. We have to become more sophisticated in how we use it to achieve societal goals but also to prevent data misuse.”
Professor Lesley McAra, of the University of Edinburgh, said there were four key challenges in delivering on the objectives of the Unicef collaboration: specifying the programme; building relationships between partners; technical issues, including linking data sets; and achieving and measuring impact.
“There is a tendency to look at data sets and think what we can do with them rather than starting with questions and challenges. It makes sense [when specifying the programme] to ask what the questions are, then look for the data assets that might address them.
“We also have to recognise that the partners in the collaborative have different spheres of influence and be able to navigate them. How do we get the voices of children into our research and shape questions that are important? We also need the highest level of ethical integrity to gain public trust and confidence.”
McAra and others on the panel stress that linking together different data sets is often much harder than it might seem. “Bringing together data sets has many technical challenges. You need to know how those data sets are constructed and what are their biases,” she said.
“Many young people do not flourish because agencies do not link up their data and look at a young person in the round. There is no holistic picture. If you can link up the different elements of their lives, you might be better placed to re-purpose public services in terms of content and delivery. That’s the real opportunity. If we can get the private and public sector to work in tandem to overcome the challenges of data linkages, we can open up discussions around public services.
“If you are looking at obesity, it’s not just about diet but equality of opportunity. If you want to have an impact, that [holistic approach] needs to be built in from day one.”
Roger Halliday noted: “We have lots of data sets in Scotland but they are in different places and different formats that are not easy to bring together.” The establishment of Research Data Scotland from April 2020 is aimed at tackling some of these problems, he added.
McAra said despite the challenges, there was “huge goodwill on all sides to make it work well”. She added: “Scotland is well-placed to become a global leader, by working together to the highest level of integrity in terms of how you use data and innovate with it.”
Adil reinforced the point, saying: “If you give confidence to the public that if you share your data in Scotland and the UK, you have the most stringent regulations in place, then you are much more likely to get the permission of the public to use their data for secondary purposes [with the aim of doing public good].”
He said the Unicef collaboration was a great opportunity to start thinking about data sources in Scotland, especially how public and private sector data – for example, supermarket data – could come together to inform decision making. “We need to work with new partners and show the value of data and make this [the use of wider data sets] routine,” said Adil.
“If we can do things in Scotland, we have the opportunity to make a real difference globally. If we can show the art of the possible, we can do it anywhere.”
Adil concluded by urging everyone to be pragmatic about using data: “What outcomes can we improve with the data we have? If we take too idealistic an approach, we might never start. With this project, it’s all about improving the health and physical well-being of children.”
Rivers added: “It’s a really exciting opportunity – a real opportunity to improve children’s lives in Scotland and around the world.”