Caldicott becomes data guardian

Dame Fiona Caldicott has been appointed national data guardian for health and care; a new role announced in the National Information Board’s IT strategy, ‘Personalised Health and Care 2020.’

The move was announced in a speech by health secretary Jeremy Hunt at the King’s Fund, where he said Dame Fiona would act as the “patient’s champion on the security of personal medical information.”

“Dame Fiona will oversee the safe use of people’s personal health and care information, and hold organisations to account if there is any cause for concern, ensuring public confidence,” he claimed.

Dame Fiona is an extremely well respected figure in the world of data and information governance. In the late 1990s, she was asked to chair a review of the way in which patient information was being used in the NHS in England and Wales, in response to the spread of IT systems to support the newly created internal market.

The eponymous Caldicott Report was published in December 1997, and set out a set of principles for the use of information that are still widely followed.

Despite this, the present government asked Dame Fiona to chair a second review into confidentiality and the sharing of health and social care information in February 2012.

The review addressed concerns that information was not being shared, even when this would benefit patient care. However, it is also confirmed that identifiable patient data should not be used for administrative and planning purposes, causing problems for commissioners and the business intelligence industry.

Dame Fiona went on to chair a panel, the Independent Information Governance Oversight Panel, which provides advice to the government on information sharing. In a statement, the DH said her new job would “strengthen her powers.”

She will now be able to intervene if concerns are raised about how an organisation is sharing data, and report concerns to the Information Commissioner’s Office or the Care Quality Commission.

Organisations that fail to act on her recommendations will be subject to fines or “the removal of their right to share personal data.”

Even so, it is clear that the new appointment has been created to try and head off another row about care.data; the plan to expand the Hospital Episode Statistics and link them to GP and other data sets that had to be suspended this spring.

Medical and privacy bodies led an outcry against an information leaflet about the scheme that failed to mention it by name or to include an opt-out form. The online activist group 38 Degrees is currently fundraising to try and stop the care.data pilots that have been put in place to test out communications strategies.

However, in a move that infuriated 38 Degrees and MedConfidential, which has made much of the running on the project, yesterday’s NIB framework not only said that care.data would continue, but that it would be expanded.

The DH statement says “no data will be extracted from GP practices as part of the care.data programme until Dame Fiona has advised the secretary of state that she is satisfied with the proposals and safeguards.”

At the end of the statement, Dame Fiona herself said: “As the first national data guardian, I am committed to holding the health and social care system to account and to acting on behalf of patients and care users.”