chaos.data “fiasco” shambles on…
UPDATE 4/9/15: The care.data ‘pathfinders’ have been “paused” again. An announcement from Somerset CCG (MS Word file) explains:
“The National Data Guardian for health and care, Dame Fiona Caldicott, will… provide advice on the wording for a new model of consents and opt-outs to be used by the care.data programme that is so vital for the future of the NHS. The work will be completed by January…”
medConfidential wishes Dame Fiona the very best for the 4 months she has been given to sort out the consent problems NHS England created, and then failed to fix in over 2 years.
UPDATE 14/8/15 (not care.data): If you are concerned at the recent news reports of high street pharmacies accessing your summary care record in future, please see this post.
UPDATE 7/7/15: Lists of the GP practices in three of the four chosen care.data ‘pathfinder’ areas have been published. Full lists and links here. As at 7/7/15, no information about the practices involved in the three Leeds pathfinder CCGs has been made public. Blackburn with Darwen, Somerset and West Hampshire CCGs have stated they intend to (re)start care.data at some point in September 2015 – Blackburn with Darwen having now delayed its “ready to start” date from the end of June.
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 did not say which individual GP practices would be involved, and provided no actual date for when the pathfinders will start. No information was provided 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.
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.