Care.Data
Sharing Patient Data - How information about you helps the NHS to provide better care ...
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  • Confidential information from your medical records can be used by the NHS to improve the services offered so we can provide the best possible care for everyone.  
  • This information,  along with your postcode and NHS number - but not your name - are sent to a secure system where it can be linked with other health information.
  • This allows those planning NHS services, or carrying out medical research, to use information from different parts of the NHS in a way which does not identify you.

Care.Data to Include Sensitive Data
09 September 2014
A report in the medical journal, Pulse, reveals that NHS England is planning to include data considered ‘sensitive’ in the data sets available to researchers and commercial interests. 

Up to this point, it has been understood that sensitive data would not be included.  Sensitive data includes information about HIV, sexually transmitted diseases and abortions, amongst other issues.

Commenting on the news, the GPC (General Practitioners Committee) Deputy Chair, Dr Richard Vautrey said: ‘The original plans for care.data were controversial enough and the anxiety they caused led to the current delay. This suggested mission creep will only add to the concerns held by many patients and clinicians about this project - and make them even less likely to support its wider roll-out.’

Meanwhile, a new bulletin from medConfidential reports a chaotic situation at the HSCIC (the agency that will handle all our data, if they ever sort out an acceptable way of doing this), with no proper development of policy or proper understanding of the issues at stake.  This even includes the revelation in July, that an unnamed organisation has been using HES (Hospital Episode Statistics – records of who’s been in hospital for what and what was done to them), illegally for commercial purposes. 

None of this gives any confidence that the HSCIC will be able to secure our data.  Fortunately, many GPs are considering opting all their patients 'out if the scheme', therefore, not agreeing to an ‘opt-in’ scheme. 
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Data - Delays and Confusion
The government agency that distributes NHS data to external research bodies has choked the flow of information while it conducts a wide-ranging review, sparking “frustration” among the researchers and charities which rely on the data.

The Health and Social Care Information Centre told its “customers” in a letter circulated last month [see attached]  that the “comprehensive review” of its policies, governance and processes aimed to help build public trust, following the damage inflicted by the Care.data debacle last year.

Care.data is NHS England’s project to link up patients’ hospital and GP data to create a national database for use by NHS organisations and private research organisations.

The letter, by the body’s director of information and analytics Max Jones, offered an apology for “any delays or confusion” caused by the review.
Giant NHS Database rollout delayed
The start of the new NHS data-sharing scheme in England involving medical records is being delayed by 6 months.
This scheme has now been delayed for several months

You have a choice ... If you are happy for your information to be used in this way you do not have to do anything

If you have any queries or concerns, please see the attached leaflet “How information about you helps us to provide better care” and the attached “Frequently Asked Questions for Patients”.

If, after reading this information, you would like to prevent this happening, please complete the attached Objection form and return it to the surgery.


For more information
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      Patients still in the dark about Care.data                
Dr Chaand Nagpaul, Chair, BMA’s General Practitioner’s Committee    
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“With just weeks to go until the uploading of patient data is scheduled to begin, patients remain inadequately informed about these proposals. As shown in a recent survey only 29% of the public recall receiving a leaflet, while 45% remain unaware of plans to share their data.”

Feedback from GPs across the country, indicates that large numbers of patients have not received any information about the plans, while others were worried about who would have access to it and how it would be used, he said.

The BMA backed the principle of using anonymised data to plan and improve the quality of NHS care, but it had to be done with the support and consent of the public, he said.

“The public awareness campaign has clearly not worked, and today we call on the government to ensure public trust in the system by properly informing the public about care.data before the currently planned data extracts commence, and produce evidence this has been achieved prior to uploads taking place,” he demanded.

The BMA was in talks with NHS England about how to proceed, he said.

SumOfUs member and retired GP Dr Ron Singer added: “The government need to explain who is going to get access to this data, exactly for what purpose and for how much. Patient/doctor confidentiality shouldn’t be open to influence by corporate lobbyists and put at risk all for a fast buck.”

Following concerns raised by its members about what to tell patients, the Medical Protection Society has today reminded GPs that their primary responsibility at this stage relates to the fair processing of information.

Practices must ensure that they engage with the process and follow the guidance* issued by NHS England, it says, as this “will put them in the best position in the event that a complaint is raised.”

                    OnMedica - 17 February 2014
     Doctors raise fears over sharing NHS patient
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NHS England has given assurances that insurance companies will not be sold data for insurance purposes. But the plans mean that private health companies that happen to have an insurance arm could be allowed access.

There is also a proposal, being discussed next month, which could give non-NHS bodies, including pharmaceutical companies, access to the data.

But an online petition, by campaign group SumOfUs.org, has received around 240,000 signatures from people against the sale of information to private companies.

Meanwhile, a risk assessment by NHS England, the organisation behind the scheme, raises concerns about the initiative.

The document, obtained by The Daily Telegraph, states: "The extraction of personal confidential data from providers without consent carries the risk that patients may lose trust in the confidential nature of the health service."  It adds: "The risks described include threats associated with 'cyberspace' such as hackers attempting to access the data illegally."

A spokeswoman for NHS England said: "We are absolutely committed to ensuring the public understand the benefits of this important initiative and also the choices available to them.

"This is why we provided leaflets and posters to every GP practice in August 2013, have produced a video animation, and have established an information line - 0300 456 3531 - for patients to call if they have any questions or concerns. Information is also available on NHS choices.

"We contracted Royal Mail to deliver a leaflet to every possible household in England during January.  We are concerned by reports that some households have not received a leaflet and are following this up with Royal Mail as a matter of urgency."

                 The Independent - 17 February 2014