chaos.data shambles on

chaos.data “fiasco” shambles on…

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The Care.data shambles

The only change in 2016 is that promises from 2013 have now been kept.

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.

NHS England has announced the four areas in which the care.data ‘pathfinders’ (pilots) will go ahead. They are:

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.

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.

The care.data advisory group was abolished in October 2015.