Better, broader, safer: using health data for research and analysis

The Goldacre Review: “This review was tasked with finding ways to deliver better, broader, safer use of NHS data for analysis and research: more specifically, it was asked to identify the strategic or technical blockers to such work, and how they can be practically overcome. It was commissioned to inform, and sit alongside, the NHS Data Strategy. The recommendations are derived from extensive engagement with over 300 individuals, 8 focus groups, 100 written submissions, substantial desk research, and detailed discussion with our SSG….

In the past ‘data infrastructure’ meant beige boxes in large buildings. In the 21st century, data infrastructure is code, and people with skills. As noted in previous reviews, many shortcomings in the system have been driven by a ‘destructive impatience’: constantly chasing small, isolated, short-term projects at the expense of building a coherent system that can deliver faster, better, safer outputs for all users of data.

If we invest in platforms and curation – at less than the cost of digitising one hospital – and engage robustly with the technical challenges, then we can rapidly capitalise on our skills and data. New analysts, academics and innovators will arrive to find accessible platforms, with well curated data and accessible technical documentation. The start-up time for each new project will shrink, productivity will rocket, and lives will be saved.

Seventy-three years of complete NHS patient records contain all the noise from millions of lifetimes. Perfect, subtle signals can be coaxed from this data, and those signals go far beyond mere academic curiosity. They represent deeply buried treasure that can help prevent suffering and death around the planet on a biblical scale. It is our collective duty to make this work…(More)”.