Call for a full conversation with the public on sharing health data

6 July 2016

Dame Fiona Caldicott’s latest review proposes a new consent / opt-out model for patient health records to be developed through a full conversation with the public.

The long-awaited data sharing report from the National Data Guardian and Care Quality Commission (CQC) review of data security in the NHS was published this morning. 

A previous review by Dame Fiona in 2013 included a principle that the duty to share information can be as important as the duty to protect patient confidentiality but with the controversial programme there has been little positive change in the use of data across health and social care. The review, commissioned by Jeremy Hunt in September 2015, was seen as an opportunity to " improve the use of data in people’s interests " (to underpin improvements in health and social care for public benefit).

Working closely with professionals, the National Data Guardian has recommended a new consent / opt-out model to give people a clear choice about how their information is being used beyond their direct care. Four different approaches have been proposed that might be adopted when asking the public whether or not they wish to opt-out. These are split between a single opt-out, or two opt-outs distinguishing between using information about the individual patient to run services and using it for research. 

The opt-out proposed will not apply to anonymised information, or where there is a legal duty to share information or an overriding public interest such as control of the Ebola virus or similar dangerous infectious disease threats.

Building trust in how the NHS looks after people’s confidential data underpinned the reports’ recommendations, which include a redesigned information governance toolkit to embed new standards and to identify at risk organisations, along with tougher sanctions for malicious data breaches.

Genomic data sharing is briefly mentioned, with the review highlighting the useful work carried out on the issues in this area, citing the example of a recent report by the PHG Foundation and the Association for Clinical Genetic Science which made a ‘number of commendable recommendations’. Dame Fiona attended a workshop that fed into this report.

The report recommends the Department of Health conducts a full conversation with the public on the proposed standards and the consent / opt-out model.

Dr Jeremy Farrar, Director of the Wellcome Trust, said: “We will only unlock the immense value of patient data if we have open and honest discussions about how and why data can be used for care and research, what’s allowed and not allowed, and how personal information is safeguarded. We welcome Dame Fiona’s call for a full conversation with the public and are very pleased to announce that we are setting up a new independent taskforce to explore the most effective ways to have discussions about uses of data”.

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