Patients with rare diseases may be able to be identified despite data extracted from GP records being anonymised before it it shared in the health service, NHS England has admitted.
The ‘small risk’ of identification means that certain patient data obtained by NHS England through the GPES system will only be disclosed in a ‘controlled environment’ where ‘robust safeguards’ are in place, Pulse has learnt.
GPs say the admission - contained in a document sent to the GPES Information Advisory Group - undermines previous assurances from NHS England that all data would be completely anonymous before it was sent to other ‘accredited’ organisations, such as CCGs and commissioning support units.
Patient-identifiable data will be extracted from GP practices by the Health and Social Care Information Centre (HSICIC) using the GPES system, but will be anonmymised before being passed to NHS England.
‘Sensitive’ codes such as HIV, STIs, pregnancy termination, IVF, marital status, complaints, convictions, abuse, will not be extracted, but the data extraction from GP records will include diagnostic codes, investigation results and information about prescriptions.
NHS England said the system will provide ‘timely, accurate information to citizens, clinicians and commissioners about the treatments and care provided by the health service’.
But in a submission to the independent board which approves all applications for data extracts from GPES, it admits anonymous data extracts with small numbers of patients or rare diseases carry a risk of identification.
They said: ‘Although amber data does not include identifiers, e.g. NHS number, there is a small risk of re-identification due to small numbers/rare diseases.
‘In view of this risk, these data can only be disclosed in a controlled environment where robust safeguards are in place as set out in the ICO guidance.’
Patients can either opt out of having their information extracted completely, or block it being disclosed by the HSCIC. In this case, the practice must ensure their objection is noted in their records and add an objection ‘flag’ to all transmissions to the HSCIC.
NHS England said GPs would be the best placed to explain to patients that their confidential data will be extracted, and so NHS England will provide GPs with publicity materials to help with this.
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The news comes after NHS England applied for a legal exemption - previously granted to PCTs - allowing them to set aside usual confidential laws so that patient-identifiable information can flow through the commissioning system. The Health Research Authority’s Confidentiality Advisory Group, who provide the Government with a recommendation about whether the legal exemption should be approved, will announce their decision on the 18 April.
A spokesperson from NHS England said: ‘Analysing linked data is essential for commissioning integrated care and to identify where improvements and efficiencies can be made, gain more precise insight into citizens needs and preferences and reduce inequalities in treatment and care.
‘Data will be held in a secure, controlled environment and made available to NHS England and other accredited/approved organisations for analysis in anonymised form with robust safeguards to prevent the re-identification of individuals.
‘The care.data system conforms to strict standards of data security and confidentiality and complies with Data Protection and Human Rights legislation and with the common law and other duties of confidentiality where they apply.’
Dr Paul Thornton, a GP in Nuneaton, Warwickshire, said it marked the end of the ‘concept of patient confidentiality’ in general practice.
He said: ‘Once NHS England get their hands on identifiable data, lots of people will want it. Other Government bodies, the Department for Work and Pensions, financial institutions, pharmaceutical companies. Patients need to be worried about this.’
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Dr Kartik Modha, a GP in London and founder of Tiko’s GP Group, will look at how technology and social media is changing GPs’ practice at Pulse Live, Pulse’s new two-day annual conference for GPs, practice managers and primary care managers.
Pulse Live offers practical advice on key clinical and practice business topics, as well as an opportunity to debate the future of the profession, and a top range of speakers includes NICE chair designate Professor David Haslam, GPC deputy chair Dr Richard Vautrey and the Rt Hon Stephen Dorrell MP, chair of the House of Commons health committee.
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