The fortnightly newsletter that unpacks system leaders’ priorities for digital technology and the impact they are having on delivering health services. This week by senior correspondent Nick Carding.

It is now five years since the government closed the controversial care.data programme, following outcry over the lack of consultation with patients about their data being shared.

The scheme aimed to join up patients’ data across the different parts of the health and social care system, for example by linking GP records with hospital episodes statistics data.

But the project suffered multiple setbacks and was subsequently shelved three years after it was launched.

Since then, there has been little progress on creating a national database of patient information, with leaders struggling to navigate the complex laws which govern how NHS data can be used.

However, last week, NHS Digital announced a scheme which has reignited some elements of care.data — to the joy of some and horror of others.

The scheme

On the surface, the new scheme sounded extremely boring. NHSD said it was replacing its General Practice Extraction Service with a new system called General Practice Data for Planning and Research.

But in effect, this means NHSD will automatically collect patient data from GPs instead of asking for it on an ad-hoc basis. The result will be an increasingly larger data repository which will be used for planning and research purposes across the NHS, not dissimilar to what was imagined with care.data.

The data collected includes information about patients’ diagnoses, symptoms, observations, test results, medications, allergies, referrals, appointments, sex, ethnicity, and sexual orientation.

NHSD said it would not collect patients’ names and addresses and that data would be “pseudonymised”. However, NHSD could still identify the patients in certain circumstances.

What happens to the data?

The data held by NHSD can subsequently be accessed by organisations upon request. During the pandemic, there were an increased number of requests from bodies such as clinical commissioning groups, local authorities, and universities for NHSD-held data to help with the covid-19 response.

The data was used to identify people most vulnerable to covid-19, rolling out vaccines and research, such as the University of Oxford’s RECOVERY trial which uncovered the benefits of dexamethasone for covid-19 patients.

Unsurprisingly, the government and NHS are both keen to seize upon the benefits that greater use of data offer, hence why the new system has been created.

NHSD said the GPDPR would “improve efficiency in data collection from GP practices and significantly increase the speed and efficiency of providing appropriate access to that data”.

The reaction

NHSD’s press release was noteworthy for the amount of endorsements it had managed to secure for the announcement. There were positive quotes from Chris Whitty, Sir Patrick Vallance, NHSX CEO Matthew Gould, Lord Darzi, University of Oxford’s John Bell, the UK Biobank, the Department of Health and Social Care, the Medical Research Council, Health Data Research UK, and several other relevant organisations.

However, as you would expect, privacy campaign group MedConfidential was less impressed.

Its spokesman Phil Booth told HSJ the new system was “worse than care.data” due to MedConfidential’s concerns over the lack of communication with patients, the possibility of commercial companies getting hold of the data, and the inability for patients to know which entities have been looking at their data.

He said NHSD should write to every single patient alerting them to the change and provide details of how to opt out, and warned the scheme risked breaching the “No Surprises” principle established by Dame Fiona Caldicott, the former National Data Guardian. NHSD said this would be a “disproportionate” action to take.

Mr Booth also questioned the “short deadline” given to patients wishing to opt out, with it only being about six weeks until the scheme goes live at the start of July.

NHSD insists the data will only be shared with organisations who have a “legal basis and meet strict criteria to use it for local, regional and national planning, policy development, commissioning, public health and research purposes” and said patients have already been made aware of opt-out opportunities through previous information campaigns.

The agency also said patients should have greater confidence that their data is being used in ways which “preserve their confidentiality as a result of the rigorous, standardised and unified approach to data management and access”.

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