Care Bill changes required to secure public trust and the availability of information for public health research
Writing in The Lancet today (Friday 2 May 2014), Allyson Pollock, Professor of Public Health Research and Policy and Peter Roderick, Barrister and Senior Research Fellow at Queen Mary University of London, call for crucial new amendments to the Care Bill in order to restore public trust in the use of patients’ data and to secure the on-going availability of genuinely anonymised information for public health research, planning and audit.
Public trust is at an all time low following the recent revelations that patient data was being sold to the commercial sector by the government’s Health and Social Care Information Centre without sufficient oversight, and that commercial companies could request the Health and Social Care Centre to establish systems for the collection and analysis of patient data.
These revelations followed on from a decision in December 2013 by NHS England to establish a system for uploading and linking patient coded data with identifiers from GP practices, known as Care.data and for sharing patient data across the health and social care system.
Following a vigorous campaign by the BMA, RCGP and medConfidential, the UK government instigated a six month delay in the implementation of this aspect of the programme and subsequently proposed amendments to the Care Bill in a bid to allay these concerns. The Bill is due to come before the House of Lords on 7 May.
In recent years and as a result of the Health and Social Care Act 2012, substantial changes have been made to the ways in which patient data are collected, monitored and particularly sold to private companies. While academic researchers and medical professionals must comply with strict rules governing the use of data for medical and research purposes, known as Section 251, the commercial sector is currently able to evade them completely.
Making patient information available to the private sector is likely to erode public trust and might lead many patients to opt out of providing information to GPs so that datasets would become unrepresentative and unreliable.
Professor Pollock argues that three amendments are required when the Bill returns to the House of Lords for debate next week to restore public trust in the uses of their data:
- to keep confidential patient data in the public sector unless commercial organisations have express consent and can demonstrate data are required for express medical purposes as set out in the law currently;
- to put the Caldicott Independent Oversight Panel on a statutory footing with a duty for its advice to be taken into account;
- and to ensure independent or parliamentary oversight of directions to the Health and Social Care Information Centre and the accreditation scheme.
Professor Pollock explains: “These amendments will stop commercial exploitation of patient data and ensure there is proper scrutiny of commercial companies’ activities but they are still not sufficient to ensure full transparency over data flows, particularly to and among private companies,” she adds. “Further discussion and legislation are needed over the next six months to put an information system in place that deserves public confidence.”
The three amendments proposed by Professor Pollock are available at: http://www.allysonpollock.com/wp-content/uploads/2014/04/AP_2014_Pollock_CareBill_Amendments_HoL_Briefing_17Apr14.pdf
More information about Professor Pollock's work is available at: http://www.allysonpollock.com/
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