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Legal action begins day before NHS patient data share is delayed

NHS England delay the start of data gathering scheme 24 hrs after legal letter sent to challenge process

18 February 2014

The announcement by NHS England, that the start of upload of patient data from GP records to a central database would be delayed by 6 months, comes just one day after lawyers began legal action against the scheme.

Leigh Day is representing medConfidential, an organisation at the forefront of campaigning for confidentiality and consensual data sharing in health and social care.

NHS England’s proposed care.data scheme would see GP practices being required to upload patient data to the Health & Social Care Information Centre (HSCIC) which would then be ‘linked’ to patient data from other healthcare settings, e.g. hospitals, and made available in various forms to organisations both within and outside the NHS.

In a letter before action, sent on 17th February 2014, lawyers question the legal accuracy of NHS England’s public information campaign in relation to the care.data scheme.

On 18th February NHS England announced that the scheme, due to start in April, will now be delayed until the Autumn after accepting that the communications campaign, which gives people the chance to opt out, needs to be improved.

The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England have all voiced concerns in recent weeks.

The public information campaign formed the basis of the legal challenge.

NHS England had said that they had distributed a leaflet ‘Better information means better care’ to every household in England. The leaflet purports to inform the public of their right to ‘opt out’ of the scheme and other ‘secondary uses’ of their information.

The legal action centred on the use of the term: ‘And you can change your mind at any time’ on the final page of the leaflet.

Lawyers argue that the ordinary meaning of this phrase suggests that, if an individual has not opted out of having their data uploaded by HSCIC, then if at any time in the future they change their mind they will be able to exercise an opt-out that completely removes any information relating to them from the database and prevents any further uploading from the GP.

However lawyers on behalf of medConfidential argue that their understanding of the scheme is that once data has been uploaded to the HSCIC, that process is irrevocable and the data can never be retrieved, including from third parties who have been passed the data, or deleted.

Merry Varney, the lawyer from Leigh Day representing medConfidential explained:

“We are pleased that NHS England have realized that the public awareness campaign has not been appropriate. Any future campaign needs to be not only distributed personally to every NHS patient but it must accurately inform people of what ‘opting out’ truly means.

“If they are simply going to resend the same information leaflet and/or reiterate the ‘you can change your mind at any time’ then we will continue with this legal action as the public must be correctly informed about how information from their GP records will be processed.

Phil Booth from medConfidential said: “If you can’t have your medical information deleted once HSCIC has extracted it from your GP, then it’s utterly misleading to tell people they can just opt out at any point after uploading begins.

“It is imperative that no patient-level data is passed on or sold to any company or organisation that won’t agree to delete it if anyone decides they want to opt out further down the line.” -ENDS-

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