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SPOTLIGHT |
Dame Fiona Caldicott's long awaited report on service user confidentiality in the health and social care system was published last week. Eleanor Tunnicliffe explains how the findings affect all organisations working in the health and social care sector.
Since its inception, the Coalition has promoted smarter and freer use of public sector information as a way of cutting costs and improving services. For example, readers may recall the publication of information from the COINS database (the database for UK government expenditure), which it was hoped would be scrutinised by an "army of armchair auditors".
In December 2011 the Government announced that it wanted to allow patients' records and other NHS data to be shared with private life science companies, to make it easier for them to develop and test new drugs and treatments. Concerns were raised about what that might mean for patient confidentiality. This and other issues prompted the instigation of Caldicott 2, in which Dame Fiona was asked to review information issues across the health and social care system.
Dame Fiona first investigated issues surrounding confidentiality when she chaired a similar review in 1996-7 on the use of patient data in the NHS. That review recommended that the NHS adopt six principles for the protection of confidentiality, which became known as the "Caldicott principles". The review also recommended that NHS organisations appoint someone to take responsibility for ensuring the security of confidential information. These people became known as "Caldicott Guardians".
The reach of Caldicott 2 – "Information: to share or not to share" – is far wider than the 1997 report. Its recommendations affect all organisations working in the health and social care sector – including local authorities. Its recommendations, if adopted, will have a significant impact on the way that local authorities operate.
On 26 April, the Secretary of State for Health, Jeremy Hunt, welcomed the report and announced that Dame Fiona will chair an independent panel to oversee and scrutinise the implementation of the recommendations in Caldicott 2. The Government will provide a full response to the Caldicott review in the summer.
Themes & key recommendations
"Paradoxically, criticism that the bureaucracy of information governance is standing in the way of sensible information sharing among professionals has gone hand-in-hand with equally vociferous criticism that the system is not doing enough to combat laxity in the protection of confidential data and information. There is a perception that too much information is being disclosed inadvertently as well as too little being shared deliberately. Furthermore there is uncertainty among many patients and users of services, who are unaware of how personal confidential data about them is collected and shared."
This quotation (see page 26) neatly captures three themes of the report; namely the need to:
The main areas of interest to local authorities are what the report says about:
The report's key recommendations under each of these headings are set out below.
In the spirit of the report this article adopts the terminology it suggests is adopted across the health and social care sector. "Personal confidential data" is defined in the report as "Personal information about identified or identifiable individuals, which should be kept private or secret". It includes information about the deceased.
Governance
Improving sharing between health and social care professionals
Extending service user rights
Public health
Speaking at the Electronic Patient Records Conference, Jeremy Hunt said that while effective sharing of patient information has enormous potential to improve patient care, services and treatments, this can only be done effectively if patients are given a say over how their personal information is used.
He announced that:
Conclusion
One of the key themes of the report is the culture of anxiety that surrounds the sharing of patient confidential data. This culture is not surprising given the complexity and opaqueness of the legal issues that those on the ground need to navigate. Getting to grips with the law of confidentiality, the Data Protection Act and human rights considerations under Article 8, is not easy. In many cases there is no clear-cut answer to the question "To share or not to share?" and it is a case of balancing different interests against one another to arrive at a practical conclusion.
The Law Commission has announced that it is about to review the law on data sharing between public bodies. A consultation will be published later this year and it is intended that a report on the scope and scale of the legal issues involved will be published in May 2014. In the interim, Caldicott 2 is a valuable contribution to helping organisations, individuals and service users navigate around complex legal issues.
Eleanor Tunnicliffe is an Associate at DAC Beachcroft. She can be contacted on 0113 251 4732 or by This email address is being protected from spambots. You need JavaScript enabled to view it..