UPDATE 23/1/15: A new cock-up has been uncovered, which potentially affects the whole country. care.data itself is currently limited to just four ‘pathfinder’ areas – and no data has been extracted yet. We provide more details here and are are working to ensure that NHS England honours all opt outs and that its promise that this will not affect your direct care is true.
care.data ‘pathfinders’ announced, October 2014
NHS England has announced the four areas in which the care.data ‘pathfinders’ (pilots) will go ahead. They are:
- Leeds (3 CCGs: West / North / South and East)
- Blackburn with Darwen CCG
- West Hampshire CCG
- Somerset CCG
The announcement does not say which individual GP practices will be involved, and provides no actual date for when the pathfinders will start. There is no information on what GPs and patients in these pathfinder practices will be told.
Announcing the pathfinders without providing answers to some of the most obvious questions patients will have – “Is my practice involved?”, “When will this happen?” – is a real concern. It suggests NHS England may be more concerned with progressing its own schedule for care.data than timely, unambiguous communication to patients.
We are told that practices will send “individual letters, emails or texts” to patients. (We assume this means there will be an online opt-out, as it would be rather difficult to include an opt-out form in a text message to which someone cannot reply.) But what exactly will these letters and other communications say?
If patients are to be able to make an informed choice, they must be provided with full and proper information – not just on the pathfinder stage, but on the longer term use of their data as well.
We have not seen those communications.
To be kept informed about the progression of the care.data scheme, please
If you do have concerns, it is still safest to opt out now to exclude your data. You can always opt in later. For more information on what you can do, please visit our How to opt out page.
care.data Advisory Group
Since March 2014, medConfidential has sat on the care.data Advisory Group (CDAG).
Having been one of the leading critics of abuses of NHS patient consent and confidentiality – in particular the care.data scheme – since we formed in early 2013, medConfidential continues to engage with NHS England, HSCIC, the Department of Health and other responsible bodies in pursuit of our stated goal; to ensure that every data flow in the NHS and care system is the best balance of consensual, safe and transparent.
Given NHS England’s public acknowledgement that things had gone so terribly wrong, we decided to engage with the care.data Advisory Group on the condition that meeting minutes and papers would be made public. We hope this will prove to be a constructive way to ensure all future plans meet the demands of patient confidentiality, enhance the protections around legitimate uses of data and provide the confidence that comes from proper transparency.