medConfidential respectfully urges members of the House to support the amendment tabled by Lord Owen to put the Independent Information Governance Oversight Panel onto a statutory footing, and also the amendment tabled by Lord Turnberg on the definition of research use, rather than the “promotion of health”.
*LATEST* Care Bill ping-pong on May 7th
The Government brought forward amendments that would expand the advisory role of the Confidentiality Advisory Group (CAG) based at the Health Research Authority, over a wider range of data releases by the Health and Social Care Information Centre (HSCIC) than those for which it is currently responsible.
While we welcome the recognition that information governance at HSCIC and its precursor body the NHS Information Centre is and has been utterly inadequate, revelations about NHS England’s deeply-flawed care.data programme – now on ‘pause’ – multiple instances of the mishandling and misuse of NHS patient data and an evident lack of consulation and coordination between the arms-length bodies, NHS England and HSCIC, the Department of Health and others on the use of patients’ data for purposes other than their direct care show the problem is not limited to HSCIC alone.
The abolition of the National Information Governance Board (NIGB) on April 1st 2013 created a critical governance gap, the consequences of which are now all too obvious. medConfidential believes that independent information governance oversight for the entire health and social care system on a statutory basis is an absolute necessity if public trust and confidence is to be regained and rebuilt.
For that reason medConfidential respectfully urges members of the House to support the following amendment:
- Oversight Panel amendment, tabled by Lord Owen
The amendment includes Explanatory notes but the following briefing lays out our concerns and some specific issues in more detail:
We also provide background briefings on particular points of information:
- What does medConfidential mean by “consensual, safe and transparent”?
- Where did all the governance go?
Who are medConfidential?
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 and incorporated as a company limited by guarantee with charitable objects, medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals, and drawing advice from a network of experts in the fields of health informatics, computer security, law/ethics and privacy. We believe that there need be no conflict between good research, good ethics and good medical care.