Opting Out of Care-Data

#MS Research Opting Out of supermarket NHS

The NHS supermarket selling your details

Having trouble Opting Out then ask your GP and their staff to read the  NHS website now. You have until March 


There is a section for Health Care Professionals get them to read that prompto http://www.england.nhs.uk/ourwork/tsd/data-info/

Prof G thinks that the data is totally anonymous, he is wrong!

“The dataset to be extracted from GP systems for the care.data service includes personal confidential data such as referrals, all NHS prescriptions and other clinical data. Identifiers (Date of Birth, postcode, NHS number (this can identify you) and gender) are required to link the GP data with Personal Confidential Data (PCD) from other care settings, e.g. hospitals, in order to analyse patient care across pathways”. 

Care.data is one of a number of flows from GP practices. 

Some disclosures of PCD are well established (e.g. for health research that is in the public interest and has special approval under section 251 of the NHS Act 2006).

Patients have the right to object to any extraction of PCD from the GP practice unless there is (a) a statutory duty to share information, (b) a court order or (c) an overriding public interest in disclosure. The Secretary of State for Health, however, has given a commitment that, for extractions of PCD from GP records that are to be sent to the (Health and Social Care Information Centre), patient objections will be respected.
In addition to controlling whether PCD flows from the GP practice to the HSCIC, patients have a right to object to PCD from any health and social care setting (e.g. hospital data) leaving the HSCIC. 

In general, such data will only be made available to accredited third parties (Does this mean pharma,insurance companies or any Tom Dick of Harry that pays for the privilege…probably look at the data protection Act and how your information is sold off) in anonymised, pseudonymised or aggregated form. PCD may flow from the HSCIC where there is a legal basis, for example to researchers or commissioners

Recording a patient objection GPs are best placed to manage patients’ objections in relation to how PCD are processed. 

GPs can control the extraction of such PCD by entering appropriate codes into the GP record.

The default position for all patients is that PCD will leave the practice where there is a legal basis; i.e. under the powers of the HSCA or a section 251 approval. 

No codes need to be entered in the record, these extracts will happen automatically.

Where a patient objects, GPs should use the following codes to record the objection:

Prevent PCD leaving the GP practice – where a patient objects to PCD leaving the GP practice use the ’Dissent from secondary use of GP patient identifiable data’ code (9Nu0: XaZ89).

Prevent PCD leaving the HSCIC – where a patient wishes to prevent PCD gathered from any health and

social care setting from leaving the HSCIC use the ‘Dissent from disclosure of personal confidential data by Health and Social Care Information Centre’ code (9Nu4: XaaVL).

Patients can change their minds and reverse a previous objection.

I suspect the second option would stop them selling on your information whilst allowing the information to be collected for the benefit of the State. Should this have been the default?

The information give has been very woolly. It should have been made easy for you to know what was happening and it should have been made easy for your choice to be made and respected. 

I went to the GPs as an exercise and the reception people apparently know nothing. I was given a few forms for “Summary Care Record” to fill in, which would have prevented my information being sent to other hospitals and so would be detromental to my health. Eventually I was told there was a form on their website. If you know the site on NHS England I can create a link. So go on your Practice web site and look for Data Care.

If not  Search  For   

then down load Fill in the Form and send to your GP

I have randomly picked a practise from the web. Serves them right for being top in the Google search engine you can click here to get the PDF


However if GPs automatically opt people out there my be consequences for the GP so big brother is out there

GP hit with contract notice over plan to opt all patients out of care.data

About the author



  • In the 1990's in the U.S., one of our states decided to compile data on medical conditions, treatments and outcomes prior to creating a singe payer system for the state. The governor assured the public all personally identifiable information would be stripped from the file prior to it being released. A grad student didn't believe the safe guards were sufficient, so she bought the database for $20 when it was released. She then went on to send the governor his complete medical history with every diagnosis and treatment he had ever gotten. It turns out only 3 data points were needed to uniquely identify 87 percent of the U.S. population without a name or specific address. Anonymity is a reasonable wish, but it is unlikely to be possible in the digital age. Maybe things are different in England, but I have to wonder as the same technology to crunch data sets is available there. Good Luck. http://thelifewelllived.net/2013/06/10/nana-your-business-my-perception-of-american-privacy/

  • How this wasn't an opt in option rather than having to opt out is beyond me. I suspect with the fuss there's been around this that this may be dropped and rethought, hopefully.

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