Health secretary Matt Hancock has ordered a review into how patient data can be shared outside the NHS for research purposes after the pandemic.
Dr Ben Goldacre, from the University of Oxford’s DataLab, has been tasked with chairing the rapid review which will report in April.
The Department of Health and Social care (DHSC) said the review’s findings would ‘complement’ a forthcoming white paper on data strategy for health and social care.
The review brief includes looking at how the NHS can share data with researchers in academia and the private sector ‘while preserving patient privacy’ and how to ‘prove to patients that privacy is preserved, beyond simple reassurance’.
The new project comes five years after the Government scrapped the controversial data sharing scheme care.data, following concerns about patient confidentiality and how the data would be used.
Health secretary Matt Hancock said: ‘The pandemic has demonstrated just how important health data is. Ensuring that researchers have secure, transparent and ethical access to health data has the potential to transform health and care and save lives.’
Dr Goldacre said: ‘The UK has a phenomenal resource in its raw data, and its people. Our challenge is now in the final lap: we need to find safe, secure, collaborative and efficient ways to turn that raw data into insights and action, to improve patient care for all.
‘There is a wealth of expertise around the country, much of it untapped. I’m excited to talk to people across health, social care and research about their experiences and concerns to help drive better, broader, safe use of health data.’
What was care.data?
The ill-fated care.data project, championed by then-Prime Minister David Cameron, had been set to launch in 2014 – extracting and storing large amounts of patient data from GP records for the first time.
This was then going to be linked with data from secondary care, anonymised and made available to researchers.
But it came under heavy critique from patient data protection campaigners and was ultimately scrapped in 2016.
However, not before NHS England had delivered an information leaflet to every household costing a total of £1m.