NHS collects patient care data from GPs

NHS England expands patient data collection from hospitals to include general practice, raising data protection questions

NHS England will expand the collection of patient care data from hospitals to include general practices to improve data on disease and treatment patterns.

According to the NHS, data will be anonymised – making it impossible to track data back to individuals – but patients will be given the choice to opt out of the scheme, reports the BBC.

NHS England chief data officer Geraint Lewis said the intuitive is about upgrading information systems by adding information about the quality of care provided outside hospital.

The NHS is to distribute leaflets explaining the scheme and how to opt out to millions of households in the coming weeks, starting in north England.

The data is to be collated by the NHS Health and Social Care Information Centre (HSCIC) to improve analysis of trends that can help plan future health services.

In anticipation of concerns about data protection – particular in the light of data breaches by NHS trusts in recent years across the UK – HSCIC medical director Mark Davis said the centre is a "safe haven" for data.

Information is kept private and used in non-identifiable form to improve the quality of health and social care, Davis said.

Anonymisation techniques

While the collection of the data is legal, it does raise questions about the anonymisation techniques and data security to be used, said Stewart Room, partner at law firm Field Fisher Waterhouse.

It is very important to understand the nature of the process that is performed on the data to make it anonymous, he told Computer Weekly.

“If the data is not truly anonymous, then there is a continuing privacy or data protection legal risk,” said Room.

What Europe is concerned about on the question of anonymisation, he said, is whether the technique used to anonymise sensitive data is true and sound, and what guarantees it provides.

Data security

Data security is also a concern, said Room, because the initiative is really a big data project involving medical information, which is the most sensitive type of information imaginable.

“So the security framework that is going to attach to this activity has got to be incredibly robust. And the more activities and processing we do, the greater the risk that is built into the system,” he said.

Room said it is essential that the data is properly anonymised and secured, bearing in mind the NHS has had quite a lot of problems on the security front in recent years with the information commissioner.

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Er, the data will NOT be anonymised before extraction and uploading from the GP records. It will not even be pseudonymised before disappearing from your GP surgery.

Once in the hands of the HSCIC, the data will be linked and provided to organisations within and out with the NHS, in aggregated forms, anonymised forms, pseudonymised (potentially identifiable) forms and identifiable forms (under section 251 of the NHS Act 2006).

The anonymisation of care.data is a myth: it is simply untrue and misleading.

Neil
www.care-data.info

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The article needs correction - it is incorrect to state that, "data
will be anonymised – making it impossible to track data back to individuals."

The data extracted will be identifiable, and matched with other identifiable data already held at HSCIC. The data released in the first instance under the label care.data may be pseudonymised or anonymised, but the transfer from GP to HSCIC is identifiable.

Data Linkage performed in the ASH of the HSCIC offers shared data in three formats, including identifiable. http://www.hscic.gov.uk/dles and personal confidential data is released already to researchers from numerous other clinical care settings: google CAG approvals, to see what kind of data is released without specific patient consent, but it may contain specific patient details, including name and full demographics: Hospitals, Mental health care, Prison health, Community care for the Child Measurement Programme, Pathology data will be provided through results messages sent by laboratories.

The HSCIC offers a patient data tracking system, so tracking back to an
individual is part of their work - certainly not 'impossible' as article
states http://www.hscic.gov.uk/dlesps....

This is all performed under the governance and confidentiality framework of the HSCIC. Without being identifiable it would not be possible to use for risk stratification and DES at CCG or CSU level. Also used for invoice verification and Payment by Results. And it is 'mission critical' to the newly privatisation commissioning activities and tendering, in Health England, under the brand logo, of the NHS.

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The data collected from GPs is NOT anonymised, the data is identifiable when transferred from the GP to the Health and Social Care information centre. It will be de-identified there before any further release unless approved for release in an identified form by an appropriate body.

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Geoff Schrecker is indeed correct, care.data is extracted from your GP surgery in completely identifiable form with all your personal details intact. At the Health and Social Care Information Centre they 'promise' to look after your data and only ever sell it (yes, it IS for sale) in anonymised form. There are ways to provide the benefits of care.data without compromising personal privacy, it is called Pseudonymisation At Source. But despite doctors calling for Pseud at Source, care.data has chosen not to do this.

If BBC News wishes to be viewed as a journalistic enterprise as opposed to a governmental mouthpiece then it should investigate the false claims of anonymisation of the care.data programme immediately.

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Your statement that HSCIC only sell patient data in anonymised form is incorrect. Perhaps you should actually visit their site and see what is available for charge. Data which includes full identification of a patient can be supplied.

"3. Personal confidential data - data in which individuals are identified, or there is a high risk of individuals being identified.".

http://www.hscic.gov.uk/dles

and
http://www.hscic.gov.uk/dlesaa...

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You're wrong as well! HSCIC will still hold patient confidential data. It will not be "de-identified", as you put it. See my reply to Marcus Baw.

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Sorry, I did not make myself clear. HSCIC as you say will be holding identifiable data. The releases that have been agreed to date and publicised are de-identified, but they may well apply for permission to release identifiable data as well. Under the present system this may not be approved, but do we trust the government not to change the system if they don't like the answers the current one gives..........

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Yes, particularly WRT your last sentence.

However, have you read the second link because that certainly doesn't look like "de-identified" data and, if HSCIC has got it, you can be sure something will go wrong and profiteers will be getting data somehow - at a disproportionately low cost. Should I contact HSCIC and tell them that they can sell my data for whatever they want so long as I get paid at least £10k?!>?!

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