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Reaction to the Caldicott Review

In September 2015, the Secretary of State for Health asked Dame Fiona Caldicott, the National Data Guardian to work with the Care Quality Commission (CQC) and carry out an intensive review into data sharing in health and social care.

The review, published this week, recommends:

  • New data security standards.
  • A method for testing compliance against these standards.
  • A new consent or opt-out model for data sharing in relation to patient confidential data.

Genomics England welcomes the publication of the National Data Guardian’s review. The review highlights the enormous value of data sharing – it is essential for high quality health and care services. Sharing personal data also enables medical research. Personal health information allows researchers to understand diseases, and opens up avenues for the development of new treatments.

The review also highlights how people must have trust that their information is being protected and used appropriately and ethically. The report recommends that the new data security standards, together with the new consent model now undergo a full public consultation.

Genomics England uses an explicit consent model for the 100,000 Genomes Project. Participants are made aware of, and agree, that their de-identified data will be used by healthcare researchers, including those in for-profit companies. Our model is covered in the report as one example.

Commenting on Dame Fiona’s review, Sir John Chisholm, Executive Chair of Genomics England said:

“We welcome the publication of the National Data Guardian’s (NDG) review and Dame Fiona Caldicott’s recommendations. The digital revolution is underway in healthcare and the potential benefits of sharing our health data are enormous. Research using new technologies can greatly improve our understanding of health and disease, unlocking new treatments that could benefit each and every one of us in the future.

“However, we must be able to have absolute confidence in the way our data is looked after by the bodies responsible for it. Measures to increase understanding of how data is used along with the choice to opt out of data sharing, should an individual wish to do so, will help to ensure people are able to have an informed view and a say in how their data is used in future.”

Read the report here.

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