February 14, 2014 | Richard King in Sheffield Blog  | Comments (0)

PRESS RELEASE: Sheffield Residents in the dark about changes to medical records

"Millions of people still don't have a clue that their family's medical records are about to be uploaded in identifiable form to a body they've never heard of, to be used for things other than their medical care - including being passed to companies outside the NHS." -- Phil Booth, medConfidential.


Fewer than half of those who attended a public meeting in Sheffield had received any information from the NHS about upcoming changes to the confidentiality of their medical records. The Open Rights Group held the meeting on Wednesday to discuss the Government's care.data scheme and its implications for privacy.

Care.data will extract identifiable medical information from the GP-held record of every man, woman and child in England, store and process it in a central database and pass it in various forms to companies and organisations inside and outside the NHS [1].

All patients should have been informed of their right to opt out of the scheme by a leaflet delivered to their household however many Sheffield residents say they have not yet received the information.  People who
have not opted out by the time their medical records are uploaded will be unable to have their data removed later. Uploads start in March.

Privacy experts from the Open Rights Group [2] and medConfidential [3] have serious concerns about risks to privacy and confidentiality through re-identification of patients using data originating from their medical records.

The Information Commissioner has advised [4] that GPs will be held responsible under the Data Protection Act if patients later complain that they were not informed about the scheme. Sheffield GPs will be breaching the 'fair processing principle' enshrined in the DPA if they fail to make patients aware of the changes to how their data will be processed.

Mark Wrangham, local coordinator of the Open Rights Group in Sheffield, said:

"The NHS have not done enough to inform Sheffield residents. GPs cannot go ahead with these uploads when so many of their patients are unaware of the changes affecting medical records."

Phil Booth, coordinator of medConfidential, said:

"Millions of people still don't have a clue that their family's medical records are about to be uploaded in identifiable form to a body they've never heard of, to be used for things other than their medical care - including being passed to companies outside the NHS."

People wishing to find out more about the care.data scheme or to download an opt out form should visit: http://www.medconfidential.org/how-to-opt-out/

ENDS

NOTES TO EDITORS:

[1] In its application to extend the types of organisations who can apply for access to care.data, NHS England wrote:

"This addendum proposes that applications may be considered by the HSCIC from all organisations, subject to their eligibility as determined through the HSCIC's governance processes. Such organisations may include research bodies, information intermediaries, companies, charities, and others."

Source: care.data Addendum Papers [PDF].

[2] The Open Rights Group (ORG) is a UK-based organization that works to preserve digital rights and freedoms by campaigning on digital rights issues.

[3] medConfidential campaigns for confidentiality and consent in health and social care. It was founded in January 2013 in response to the imminent and serious threat posed by radical changes in the way patient health information is to be collected and passed on. medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals. Opt out forms and letters: http://www.medconfidential.org/how-to-opt-out/

[4] Article in Pulse (a magazine for GPs): http://www.pulsetoday.co.uk/20005505.article#.UvzzZqEakw4 'GPs held responsible for patient complains over NHS data sharing project, says ICO.'

For further information please contact the Open Rights Group press team.

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