National Data Guardian’s Review published

The National Data Guardian for Health and Care has today published her Review of Data Security, Consent and Opt-Outs.

Dame Fiona Caldicott

Dame Fiona Caldicott, the National Data Guardian for Health and Care (NDG), today publishes recommendations to strengthen the security of health and care information secure and to help the public make informed choices about how their data is used.

Please click here to read the review, or click here to watch a series of videos in which Dame Fiona Caldicott speaks about the importance of public engagement.

Welcoming the review, Stephen Curtis, Director of the Centre of Excellence for Information Sharing said;

“Joined up health and care services are what service users can and should expect.  People should fully expect to understand how their information is used.  All those involved in delivery of services are responsible for ensuring this is done safely and securely.  Dame Fiona’s report identifies public awareness and leadership as crucially important:- they are foundations for ensuring information is shared for better services.  They will help drive ownership of better information handling across the system, and accountability for ensuring appropriate behaviours and as such will be foundation stones for the joined up services people expect.”

Press release from the Office of the National Data Guardian:

‘The proposals are contained in the National Data Guardian for Health and Care: Review of Data Security, Consent and Opt-out. The recommendations are made to the Secretary of State for Health, Jeremy Hunt, following his commissioning of reviews from the NDG and the Care Quality Commission (CQC), which has today also published its report on data security in the NHS.

Recommendations
The National Data Guardian has developed ten new data security standards to apply to all organisations which hold health or care information. Dame Fiona is calling on leaders of health and social care organisations to demonstrate clear accountability and responsibility for data security, just as they do for clinical and financial management and accountability.

Dame Fiona is also calling for a much more extensive dialogue with the public about how their information is used and the benefits, from researchers making breakthroughs in life-saving medicines to regulators spotting quickly when things go wrong.

For those who do not want their confidential information to be used for purposes other than their direct care, Dame Fiona has developed a new opt-out. She has also reaffirmed that whether people opt out or not, they should be reassured that their health and care information will only ever be used if the law allows and never for marketing or insurance purposes, unless they separately consent to this.

Next steps
Dame Fiona has called for a full and comprehensive public consultation on her recommendations and further testing of the proposed consent/opt-out model.

Dame Fiona is clear that that it will be important to hear the views of patients, health and care professionals, researchers, commissioners and others in this consultation and beyond.’