York Big Ideas Festival report 4 (BETTER CULTURE AND CONVERSATIONS)
View the other York Big Ideas Festival reports HERE.
Chair: Paul Goldsmith, Founder of digital health companies, MHRA NED, NHS Clinical Senate.
- Dame Julia Unwin, chair of Smart Data Foundry and former CEO of JRF,
- Rosario Piazza, JRF’s Chief Insight Architect,
- Roy Lilley, founder member, NHS Confederation and owner/editor at nhsManagers.net.
Unlocking the power of financial data held about us by private companies could turn “a dirty little secret” into something that helps save lives and benefits the nation.
The “incredibly important data” banks and supermarkets harvest today means they know more about our needs than GPs, social workers or local authority housing officers. Accessing that data and putting it to use for public good could bring huge benefits if done in a safe, consent-driven way that people and public decision-makers can trust, the Radix Big Data debate heard.
“The story about what data is held about us is a dirty little secret,” Smart Data Foundry chair Dame Julia Unwin said. “The people who hold the data know that most of us, when we browse the internet, or pay with our cheque card don’t really think about it – we allow it to be done because it’s convenient – but there is no public benefit at the moment, the benefit is all going one way.
“If you believe that old prediction that data is the new oil, we ought to be getting something for public policy out of it – not be victims of it. It should not be monopolised by private companies.”
The Smart Data Foundry was set up to investigate how data collected by banks, supermarkets and delivery firms such as Amazon could be used for public purpose. Public policy makers needed private companies to share it because it revealed a more accurate predictability. “We’re always driving looking into the rear view mirror – always looking to see what has just happened, it’s always retrospective,” Dame Julia, whose public policy career spans four decades, said.
She described as “a disgrace” the level of ‘real time data’ held about us by banks, loyalty cards, online companies such as Amazon and cookie-using ads simply for marketing.
“The data is used for marketing, sometimes for innovation but never, unless we create a new construct, for public purpose. There are things we should do about it which inform how we go forward and so that we start to have some headlights in our car and not just a rear view mirror, we can see what is happening in real time, who is about to cross the road.
She added: “I don’t know whether we need legislation. The companies are very frightened about the public trust issue. It’s high on their agenda because it is absolutely essential to them and their business model that they can collect data – if we withdraw our permission and treat it as a scandal that they know stuff about us that our doctors don’t know, there will be big problems ahead.”
She was backed by NHS blogger Roy Lilley, who said improved data could help authorities switch from a reactive approach to proactive decisions as the risk of inaccuracies in data currently held often undermined confidence to act, and there were no resources to check data analysis results.
He cited the example of new software developed for local authorities scanning social-care data identifying domestic violence, substance misuse, families with previous child welfare issues, court information, debts, county court judgements and hospital accident and emergency admissions.
“No genius is required to realise it can spot cases of child abuse, possible child abuse and from a mile off, families heading in that direction.” Yet last year, the NSPCC ‘Childhood Day’ revealed half a million children suffered abuse, he said.
“Are we smart enough to understand what data says? Yes. Are we smart enough to listen and resource what it tells us to do? No. It would be a brave social worker who took a child into care on the basis of a data-based forecast.”
Lack of NHS investment in IT had led to a variety of different systems being used for patient records resulting in different systems being used for patient records leaving clinicians working at hospitals a mile apart unable to see the records of patients being transferred between them, the debate heard.
Rosario Piazza whose role as chief insight architect at the Joseph Rowntree Foundation, agreed that better real time data was needed in his role focusing on ways to tackle poverty.
The ‘little bit of data’ that was currently available was not timely or representative and excluded many families. “By the time it’s published it doesn’t speak to what’s going on right now in the present,” he said.
But safeguards were needed, he warned, as data without context or stewardship was not just meaningless – it was dangerous. “It needs the human element to it. Data, especially when it’s about people, has to be respectful, data must be generated and used in a way that is proportionate and accurate and I’m not sure AI can guarantee that yet.”