For immediate release – Thursday 18th December

The Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, published its report [1] to the care.data Programme Board this afternoon.

Responding, NHS England has welcomed Dame Fiona’s “observations and the insight it offers”, and will “discuss the report further once we have had the opportunity to speak with our colleagues in the pathfinder areas”.

The report lists 27 areas of concern for the care.data Programme Board itself, containing some 52 unanswered questions, with 7 additional tests that pathfinder CCGs must meet.

The sheer number of unanswered questions indicates just how fundamentally misconceived care.data was from its inception, and at this stage – 10 months after the programme was stopped – suggests continued mishandling by those inside the care.data bunker at NHS England.

Questions raised in February remain unanswered at Christmas. No doubt someone at NHS England will find a lump of coal under the tree when they’re at their desk next week.

Phil Booth, coordinator of medConfidential, said:

“It’s up to NHS England whether care.data in 2015 will be handled as badly as in 2014. Discussing questions to which they should already have answers with people they’ve been discussing with for months risks repeating the same failures over again. This needs a second reset [2].

“It all boils down to what will patients be told? What will actually happen? And who will make sure that all of this is true? Quite clearly Dame Fiona, and the public at large, still don’t know.”

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Notes for Editors:
1) The Independent Information Governance Oversight Panel’s report to the care.data Programme Board on the care.data Pathfinder stage: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/389219/IIGOP_care.data.pdf

2) “The re-constitution of the programme board follows recommendations from the Major Project Authority’s Project Validation Review”. Chair’s notes from care.data Advisory Board meeting on the 25th June: http://www.england.nhs.uk/wp-content/uploads/2014/07/ad-grp-notes-250614.pdf

medConfidential campaigns for confidentiality and consent in health and social care, seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Founded in January 2013, medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals.

For further information or for immediate or future interview, please contact Phil Booth, coordinator of medConfidential – phil@medconfidential.org

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