Dame Fiona Caldicott, Chair of the Independent Information Governance Oversight Panel (IIGOP) which advises the NHS and ministers on the handling of patient information, has commented that the currently delayed care.data programme could have been planned better.
Vallance, C. (2014). NHS Care.data information scheme ‘mishandled’. London: BBC News, April 18th 2014.
Approved Data Releases (HSCIC)
The HSCIC has published a list of 459 approved data releases data releases between April-December 2013. There were 160 organisations involved; with 347 releases of pseudonymised data and 75 releases of identifiable data.
Hughes, D. (2014). List of bodies accessing NHS patient data released. London: BBC Health News, April 3rd 2014.
This relates to:
Register of approved data releases. London: Health and Social Care Information Centre (HSCIC), April 2014.
The full list:
Approved data releases [document untitled]. London: Health and Social Care Information Centre (HSCIC), April 3rd 2014.
Possibly of interest:
Paduano, M. (2014). NHS patient information in data breach by Diagnostic Health. Birmingham: BBC Midlands Health News, June 16th 2014.
Standardisation Committee for Care Information (SCCI)
National governance arrangements for information standards, data collections and data extractions took effect on April 1st 2014. The Standardisation Committee for Care Information (SCCI) has responsibility for agreeing standards for health and social care in England; it replaces the Information Standards Board (ISB).
Information Standards, Data Collections & Data Extractions: National Governance. London: Health and Social Care Information Centre (HSCIC), April 2014.
A summary list of existing Information Standards Notices (ISNs) has been compiled, which SCCI / HSCIC will update to reflect new ISNs:
Consolidated list of information standards, collections and extractions, March 2014. Version 1.0. London: Health and Social Care Information Centre (HSCIC), March 2014.
Review of Data Releases (HSCIC)
The Health & Social Care Information Centre (HSCIC) has released a report indicating significant administrative lapses in recording the release of data. Decision making processes were sometimes unclear, and records of decisions incomplete.
Review of data releases made by the NHS Information Centre. London: Health & Social Care Information Centre (HSCIC), June 2014.
This relates to the full pwc report:
HSCIC Data Release Review: PwC’s Final Report. London: pwc [and] Health & Social Care Information Centre (HSCIC), June 2014.
National Data Guardian: Safeguarding Patients’ Healthcare Information (Department of Health)
Dame Fiona Caldicott has been appointed as the National Data Guardian for health and care. This role involves being the patients’ champion on the security of their personal medical information.
National Data Guardian appointed to safeguard patients’ healthcare information. London: Department of Health and National Information Board, November 13th 2014.
Possibly also of interest, there are an estimated 2,500 breaches of patient confidentiality by the NHS every year, according to “Big Brother Watch” the privacy campaign group.
NHS has repeated data breaches. London: BBC Health News, November 14th 2014.
Google’s DeepMind / London Hospitals Data-Sharing Agreement
DeepMind, Google’s artificial intelligence division, will be granted access to patient information from the Royal Free, Barnet and Chase Farm hospitals. This data will be used to develop an early warning system (the Streams app) for acute kidney injury (AKI). AKI is a contributory factor behind up to 20% of emergency hospital admissions (and possibly 40,000 deaths per year in the UK). One quarter of AKI cases may be preventable with earlier interventions.
Wakefield, J. (2016). Google given access to London patient records for research. London: BBC Technology News / BBC Health News, May 3rd 2016.