Goldacre review of patient data use for research

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The Goldacre review was set up by the government in February 2021 to look at how to improve safety and security in the use of health data for research and analysis. It is led by Prof Ben Goldacre, a doctor and academic who specialises in the use of data in healthcare.

The review recommends the creation of a Trusted Research Environment (TRE) where “data misuse can be obstructed and detected, and where every action on the data can be publicly disclosed to earn public trust”. Prof Goldacre believes this would address the concerns raised by patients and data privacy groups that stopped attempts to create a full national GP research dataset in 2013 (care.data) and 2021 (Data for Planning and Research).

The idea is that once the TRE is up and running it will replace the numerous individual data extractions that GP practices are currently subject to. In turn this would remove the need for practices to assess and approve or deny individual data sharing agreements, easing the administrative burden on them.

The review proposes the creation of either a national data controller for the patient records copied into the TRE or that trusts and GPs would nominate a single entity to approve requests on their behalf as part of an “approvals pool”.

Prof Goldacre recommends that standardised training and qualifications be produced for NHS data analytics roles to improve standards and create a consistent approach to processing and analysis. This would also extend to standardising how databases work, removing variation between local databases that store the same datasets, thus removing the additional processing required to add them into a national dataset. The review proposes that “modest additional funding” would be required for the training, recruiting of data specialists and upgrading systems.

The full report, an extended summary and an executive summary are available on the Government website.