NHS England’s controversial plan to extract confidential information from patient records to build a national database faces a delay after an intervention by the information watchdog.
HSJ has learned the Information Commissioner’s Office met with NHS England last Thursday to discuss legal concerns amid mounting general practice opposition to the care.data project, particularly about the speed with which it was being implemented.
The ICO said it was concerned GPs were being given insufficient time to carry out a legal duty to inform patients about the programme, which will link patient data across different care settings, and allow them to opt out if they wish.
In an email seen by HSJ, the Health and Social Care Information Centre - which will run the database - wrote to GP “early adopter” practices on 29 August warning they had “approximately eight weeks” before it began extracting data.
However, NHS England has now agreed data will not be extracted until the ICO has approved its proposed timescales and it has also agreed to run a national awareness campaign.
One expert said it was “very unlikely” NHS England would be able to complete this process and start the extractions in line with the initial mid October timeframe indicated by the 29 August email.
It is understood the information centre is reviewing data collection methods, potentially further exacerbating any delay.
NHS England’s business plan for 2013-14 – 2015-16 said: “75 per cent of GP practices will be providing the full extract to care.data by September 2013.”
ICO group manager of public services Dawn Monaghan said she was “encouraged” following the meeting with NHS England.
She said: “NHS England has given us assurances that no data extraction will take place until we have agreed that the arrangements and timescales they are planning will give GPs enough time to carry out their legal duty.
“There has been a lot of confusion among GPs but it seems very unlikely the [information centre] will be able to start extracting data in the next four weeks as some GPs fear.”
Julia Hippisley-Cox, a professor at the University of Nottingham who specialises in information governance and is also a GP, said: “There is a lot of confusion among patients about the implications of opting out of care.data and some GPs are very concerned about being given sufficient time and resource to carry out their legal duty to ensure patients are fully informed.”
NHS England said in a statement: “We are clear that eight weeks is a minimum requirement, not a maximum, and have always been committed to doing everything we can to ensure patients’ understanding of the programme and of their rights for their objections to be recorded if they have concerns.”
What is care.data?
The new care.data project will for the first time collect and link up patient data across the entire health and social care pathway.
NHS England says it will support patient choice; promote transparency and accountability; improve outcomes and drive economic growth by making the country the default location for world-class health services research.
Initially, the database, which will be housed and operated by the Health and Social Care Information Centre, will be established by extracting GP data and linking it with the secondary care dataset, the hospital episodes statistics.
In the longer term, HES will be expanded into a far richer, more comprehensive dataset.
The new dataset will be called care episodes statistics and incorporate and link patient data from different care settings.
Under the plans outlined to date, the information centre will extract patient confidential data from the different datasets and then link them.
In the majority of cases - such as when academics seek data for research purposes - the data would be anonymised by information centre before being sent on to them.
Any organisation wishing to obtain patient confidential data would need to go through the existing approval process which requires them to seek a special approval under section 251 of the NHS Act 2006.
Section 251 requests are then considered by the independent Confidentiality Advisory Group.
NHS England has made a commitment that patient confidential data will not be shared without explicit consent unless there is a legal basis or an overriding public interest in disclosure.