Care.data concerns as new platform proposed

A proposal for a new platform for the national collection of confidential patient information is under consideration, as concerns continue that elements of the care.data scheme will be resurrected.

The Department of Health spokesman confirmed a proposal “in the same area” as care.data was going “through a review process”.

The exact shape of the programme was yet to be decided, and was still subject to public consultation, but care.data “is going to be replaced in some way”, he said.

Last month, Digital Health News reported that despite the controversial care.data scheme being dumped in the wake of the Caldicott report, there remained fears that parts would be resurrected, with even fewer options for patients to opt-out of sharing their data.

The new proposed platform “under review” has been referred to as the Data Services Platform. On NHS Digital website it is described as a “deliver central data processing capacity and capability to support the landing, processing and analysis of personal confidential data”.

It will be capable “of receiving, validating, nationally pseudonymising, processing and distributing anonymised in context data to commissioners”.

It is part of a wider programme, known as the National Data Services Development, to improve “transmission and distribution of de-identified patient-level commissioning datasets”, starting next year.

In a statement, NHS Digital said this programme was not in any way a successor to care.data. Rather it was a new technology for nationally compiling patient data that was already collected and did not create a new authority to collect or share more data.

“The Data Services Platform (DSP) proposal is not a new data collection. The DSP would be a piece of technology, which would allow NHS Digital to securely collect existing data sets in a more effective way, and to better store and process the information.”

However, some clinicians were less convinced.

Neil Bhatia, a doctor and transparency and privacy campaigner, said the data services platform “overarched the idea that everything is pooled in the middle”.

“It’s all smoke and mirrors. It trying to say, let’s move away from care.data but let’s do the same thing but just sanitise it.”

The care.data programme was first approved in 2012 as an ambitious project to expand the Hospital Episode Statistics and to link them to other data sets, starting with GP data, and to make this available to researchers and others.

The programme was paused last year amid an open revolt from GPs and a botched publicity campaign, in which thousands of leaflets were distributed which failed to name the programme or offer an opt-out form.

Care.data was finally scrapped completely last month following the release of Dame Fiona Caldicott’s into data security, consent and patient opt-out, that recommended NHS England “consider its future”.

However, the government has made it clear that efforts to collect and share more patient data at a national level would continue.

After the release of the Caldicott report, the then minister for life sciences George Freeman said that the government remains “committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients."

Public consultation on Dame Fiona’s recommendations closes on 7 September.

For an indepth look at Dame Fiona's report and the possible implications for care.data's successor, read our feature here.