For immediate release – Tuesday 6 May 2014
Care Bill care.data amendment: no public confidence without Caldicott
An amendment to the Care Bill  tabled today by Lord David Owen for ping-pong tomorrow, would, if adopted, put on a statutory footing an independent oversight body led by Dame Fiona Caldicott, the single person with the moral authority required to restore public trust and confidence in the handling of NHS patient information.
NHS England’s flagship new programme, care.data, was put on hold after a series of revelations about mishandling and sale of patient data to insurers and for commercial re-use, back in February. Since then, wider problems have been revealed, including lack of consultation and coordination between the new arms-length bodies, NHS England and HSCIC, and the Department of Health on the use of NHS patients’ medical information for purposes other than their direct care.
The new amendment would put the Independent Information Governance Oversight Panel (IIGOP) that the Secretary of State asked Dame Fiona Caldicott to establish  onto a statutory footing, establishing a single independent body with information governance oversight of the entire health and social care system.
Phil Booth, coordinator of medConfidential , said:
“The government has not only failed to act on many of the recommendations in Dame Fiona’s review, it is pushing ahead with initiatives like care.data that contradict some of the core principles she laid out.
“Not only this, but in its single-minded pursuit of an unprecedented data grab from patients’ GP records, NHS England has repeatedly ignored or avoided the very Panel set up to provide advice and challenge on these issues.
“Right now, Dame Fiona is the only person with the moral authority to restore public confidence in the handling of NHS patient information. If it truly wants to regain the trust of both patients and professionals, the government will accept this amendment.”
Notes for editors
1) A copy of the amendment is available here: https://medconfidential.org/wp-content/uploads/2014/05/Oversight-Panel-amendment.pdf and associated briefings are available online at: http://medconfidential.org/2014/lords-care-bill/
Some background to the amendment:
- On 5th April a care.data conference co-organised by Richard Horton, Editor of The Lancet and Allyson Pollock, Professor of Public Health Research and Policy, QMUL, was held at Queen Mary University of London:https://medconfidential.org/2014/care-data-conference-at-qmul-05-04-14/ – includes full list of speakers.
- Attendees included Lord David Owen, Professor Sir Simon Wessely and other prominent doctors including Dr Joanne Bailey (BMA General Practitioners Committee), plus representatives of statistical bodies, health professionals, NHS campaigners, concerned patients and a representative of NHS England.
- Prof Pollock and Peter Roderick from QMUL and Phil Booth from medConfidential were given a mandate to draw up an amendment designed to be constructive and having the broadest appeal; the amendment tabled by Lord Owen today replaces the one originally drafted for Report and Third Reading in the Commons in March:http://www.opendemocracy.net/ournhs/caroline-molloy/privacy-campaigners-team-up-with-leading-public-health-professor-to-fix-hunts
- The amendment has wide-ranging support, including the Wellcome Trust, the Association of Medical Research Charities, the Faculty of Public Health and others, and has evolved out of a weeks-long process that demonstrated readiness to engage across the political spectrum.
2) The IIGOP was established at the request of the Secretary of State to oversee the implementation of the recommendations from Dame Fiona’s review, ‘Information: to share or not to share’ (https://www.gov.uk/government/publications/the-information-governance-review, commonly known as Caldicott2) and to “advise, challenge and report on the state of information governance across the health and care system in England”:https://www.gov.uk/government/groups/independent-information-governance-oversight-panel
3) 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, on 07974 230 839 or firstname.lastname@example.org
– ends –