Who’s on the Caldicott review?

Posted on May 29, 2012 by

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The department of health have announced who will be taking part in the independent review of the balance between protecting patient information and its sharing, to improve patient care that was launched in February. This is being led by Dame Fiona Caldicott and includes social care experts, individuals working in different bodies across the NHS and public health, royal colleges, academics and clinicians, patient voices – including Jeremy Taylor, CEO of National Voices – and medical research charities – Sir Mark Walport, Director of the Wellcome Trust.

The review now has its own website where you can read the terms of reference. These include exploring not just how the sharing of personal health records is regulated and governed but also how this is communicated to patients and what they need to know in the future about how their health records may be used.

Background

Dame Fiona Caldicott led a review of the security of patient information in 1997. This set up a system with individuals in every NHS and local authority who make decisions over sharing of identifiable information, balancing the public  interest of protecting confidential information with the public interest for sharing the information. These individuals are called “Caldicott Guardians“.

Patient data is a huge resource for health research – see this leaflet explaining how data is used at the moment.

But the system is very complicated and does not work perfectly, there are particular difficulties around getting an individual’s consent to be approached if there is a research study relevant to them (meaning a researcher will need to look at their data to find out whether the study is relevant to them first), and enabling researchers to access identifiable data which they might need to do for example if they want to explore the incidence of disease in particular geographical areas or if they want to link information with different datasets. It’s important that a safe and secure system is developed that enables valuable research to go ahead while ensuring that the public can have confidence in how their data is managed by the NHS.

The Academy of Medical Sciences conducted a very detailed review of this a few years back –Personal data for public good: using health information in medical research.

And an independent review established by the Government and led by Mark Walport (Director, Wellcome Trust) and Richard Thomas (Information Commissioner) published a report in 2008 making recommendations on the use of patient data for medical research. To which the government responded in November 2008

And there is a really good summary of all the issues in the Academy of Medical Sciences recent review of the regulation and governance of health research – chapter 6 and includes some great case studies of research projects that have had difficulty getting off the ground in the current system.

In the Strategy for UK Life Sciences published in December last year, the government announced steps to develop a safe and secure system which opens up patient data for research and ensures patients are offered opportunities to be involved in research relevant to them are valuable. These include the creation of a Clinical Practice Research Datalink, linking up datasets from GP and hospital care so that it is possible for  researchers to access data about a patient’s entire journey through the care system, and a planned consultation on the NHS constitution to explore whether  we should move to a system where anonymous data collected during a patient’s care in the NHS may be routinely used for research unless the patient has asked to opt out.

A ten-year strategy to change how information is managed and used by the NHS was published earlier this month and referenced the importance of this review to shape how we develop the system to balance the protection of confidential and identifiable information within our health records and the use and sharing of information to improve healthcare.

What next?

The review is due to report to the Secretary of State in 2012 but the terms of reference are pretty long so they may not be able to address everything in one go – in this case they may also recommend that further investigation is undertaken.

Posted in: Policy