Last reviewed 16 February 2021
The Department of Health and Social care (DHSC) has commissioned a rapid review into how patient data can be shared outside the NHS for research purposes after the Covid-19 pandemic, and will report on findings in April 2021.
Health and Care Secretary Matt Hancock announced that the review, to be chaired by Dr Ben Goldacre of the University of Oxford’s DataLab, would complement a forthcoming white paper on data strategy for health and social care.
The terms of reference for the review include looking at how to facilitate access to NHS data by researchers, commissioners and innovators while preserving patient privacy; looking at the types of technical platforms, trusted research environments and data flows that are the most efficient and safe for certain common analytic tasks; how to rapidly overcome technical and cultural barriers to achieving this goal; and assessing where current approaches have been successful and where they have struggled.
The review will also look at how the Government can avoid unhelpful monopolies being asserted over data access for analysis.
This comes five years after the Government scrapped the care.data scheme, which was to extract and store patient data from GP records for the first time and link them with data from secondary care, become anonymised and made available to researchers. But concerns about patient confidentiality and how the data would be used led to care.data pilot schemes being scrapped. Health managers admitted they were unable to implement 700,000 patient opt-outs to GP data being shared and former Health Secretary Jeremy Hunt moved on to commission Data Guardian for England Dame Fiona Caldicott to review and develop guidelines for the protection of personal data against which every NHS and care organisation would be held to account.
Dr Goldacre recently praised the UK’s “phenomenal resource” in its raw data and its people. He said: “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.”
He highlighted a wealth of expertise around the country, much of it untapped, and said he was excited about talking to people across health, social care and research about their experiences and concerns “to help drive better, broader, safe use of health data”.
DHSC information about the review is available at: https://www.gov.uk/government/news/new-review-into-use-of-health-data-for-research-and-analysis