Caldicott report highlights 'anxiety' and disagreement over record sharing
The cultural and practical challenges faced by the NHS in sharing patient records between health and social care agencies are outlined in a major review published today.
Dame Fiona Caldicott’s government-commissioned review of information governance highlighted “a lack of consensus” on information sharing and said “a culture of anxiety permeates many organisations from the boardroom to front line staff”.
The review also warned that government plans for patients to access their records across the health and social care system could be in jeopardy without “a clear plan for implantation” .
The report, Information: To share or not to share? The Information Governance Review (see attached), said: “The review panel found the anxiety results from instructions issued by managers in an attempt to protect their organisations from fines for breaching data protection laws.
“This anxiety must be changed to trust, in order to facilitate sharing on the front line.
“The constant message from caring and committed staff was that there should be a presumption in favour of sharing for an individual’s direct care and that the exceptions should be thoroughly explained, not vice versa.”
As revealed by HSJ last month, the report recommended a new duty to promote sharing but with a framework to protect confidential information (see box below for more recommendations).
The report said: “The duty to share information can be as important as the duty to protect patient confidentiality”.
However, the authors found “a lack of consensus on the need for identifiable data to be used for commissioning purposes”.
The report said: “[NHS England] suggested that the use of personal confidential data for commissioning purposes would be legitimate because it would form part of a ‘consent deal’ between the NHS and service users.
“The review panel does not support such a proposition.
“There is no evidence that the public is more likely to trust commissioners to handle personal confidential data than other groups of professionals who have learned how to work within the existing law.”
Last month Dame Fiona told HSJ the six information governance principles she formulated in her first review in 1997 were still relevant today.
The first review led to the introduction of “Caldicott guardians” responsible for data security in each organisation.
Speaking at the launch of the report this morning, health secretary Jeremy Hunt said it was “excellent”.
He said a fuller government response would follow but that he “welcomed the spirit” of the review.
Questioned on whether the issue of patient consent to the sharing of their records, he said the NHS would not “cancel” existing agreements with patients who wish to opt out of but that there may be a case for “re-contacting people to explain the new arrangements”.
Patients will have a “veto” on their information being shared.
He said: “GPs will not share information with the Health and Social Care Information Centre if people object.
“There will be some overrides and very clear situations, a public health emergency, a life and death situation child abuse, these are the kind of overrides that people would expect.”
A summary of the review’s 26 recommendations and findings
- The Information Commissioner’s Office and Care Quality Commission should work together in “ensuring the health and social care system is properly monitored”
- Commissioners do not need dispensation from confidentiality, human rights and data protection law “since, with little effort, they can operate perfectly well within it”.
- Every proposed use of personal confidential data should be reviewed by an appropriate guardian
- Personal confidential data should only be used if is absolutely necessary
- The minimum necessary amount of personal confidential data should be used
- Everyone with access to personal confidential data should be aware of their responsibilities
- The duty to share information can be as important as the duty to protect patient confidentiality