08 April 2014
On 08 April 2014, the House of Commons Health Select Committee is hearing evidence on the handling of NHS data from Kingsley Manning, Chair of the Health and Social Care Information Centre, and Max Jones, its Director of Information and Data Services.
In February, NHS England announced a six month delay in implementation of its programme for uploading and linking coded patient information with identifiers from general practice IT systems. Since then, the government proposed in the House of Commons a number of amendments to the Care Bill, but these were criticised as falling short of being sufficient to restore public trust. We understand the matter will come before the House of Lords on 07 May 2014.
Following the announcement, a conference was organised on 05 April 2014 at Queen Mary University of London by Prof Richard Horton, editor of The Lancet and Prof Allyson Pollock of Queen Mary University of London, and chaired by Prof Horton. They wished to hear a spectrum of views on a complex issue and to consider ways forward. It was attended by about 50 participants, including doctors, patients, medical professionals and researchers, academics, statisticians, IT experts, and campaigners.
Afterwards, a letter was written to Sir Andrew Dilnot, chair of the Board of the UK Statistics Authority, asking him to consider making a statement of the Board’s position in relation to the care.data programme and the Centre.
Conference outcome statement – 08 April 2014
Clear and widespread calls were made for extending the “pause” in implementing the programme, in light of the complexity and sensitivity of the issues involved and the damaging implications of getting the legal framework wrong.
Concern was expressed that NHS England’s attempted roll-out of the programme had so far been inept and had not encouraged trust, and that insufficient time was being given for considering the many, differing, and sometimes conflicting needs and interests that a health information system must properly address. It was felt that the government’s rushed and cosmetic amendments to the Care Bill would close down rather than open up that consideration.
Concern was also expressed about the longer term operational difficulties in accessing data experienced by public health staff who have moved to Public Health England and local authorities under the Health and Social Care Act 2012. The more recent moratorium by the Health and Social Care Information Centre (HSCIC) on giving access to data is causing problems for researchers who have gained the necessary permissions but are unable to proceed in their work.
Prof Allyson Pollock, professor of public health research and policy:
Patients entrust their personal medical information to the medical profession and do not expect it to be sold on to commercial companies for exploitation and profit. Data are essential for planning and medical research and for monitoring patients’ access to care. The government has jeopardised the trust and it can only be restored by restoring public accountability and putting robust systems in place to prevent HSCIC from selling on data.
Prof Alison Macfarlane, professor of perinatal health at City University:
The hasty and incompetent way in which NHS plans to implement care.data, without first gaining public confidence and ensuring adequate safeguard means that the opportunity to derive important information for public health practice and research is being lost. It has prompted an opt out campaign which could undermine the quality and completeness of other data already being used by public health practitioners and researchers. The recent embargo on releasing data to researchers who have obtained all the necessary permissions to use the data in secure environments means that national research funds are being wasted.
Phil Booth, coordinator of patient privacy group medConfidential:
The clear sense emerging was that patients, medics, researchers and professional bodies will simply not accept knee-jerk legislation from the government or NHS England pushing ahead on a completely arbitrary schedule. This is far too important to get wrong and the cost of rushing would be to permanently damage trust.
Peter Roderick, barrister and senior research fellow at Queen Mary University of London:
National, EU and international laws, as well as professional rules, protect patient confidentiality. Using patients’ information beyond their direct care are exceptions to those laws, but there are good reasons for them, such as public health research. Part 9 of the Health and Social Care Act 2012 allows the Information Centre to obtain information about patients and to pass it on outside the NHS, but the full implications of doing so are only now becoming clear.
For more information contact
Prof Allyson Pollock
020 7882 5637 / 07976 978304
The Health and Social Care Information Centre was set up in 2005 as a Special Health Authority. It was abolished by the Health and Social Care Act 2012, and re-established as a body corporate and Executive Non Departmental Public Body with effect from April 2013.
In December 2013, using its new powers under Part 9 of the 2012 Act, NHS England directed the Centre under The Health and Social Care Information Centre (Establishment of Information Systems for NHS Services: Collection and Analysis of Primary Care Data) Directions 2013 to collect and analyse information about patients from GPs as part of the care.data programme.