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The dame balancing clinical need and confidentiality for patients
HAVING spent a lifetime serving the NHS, Dame Fiona Caldicott knows all too well the pitfalls of different health professionals failing to share information.
Now her concerns have won support from the highest possible authority as recommendations from her study into patient confidentiality are to be adopted in full by the Government.
It will more than confirm the fears of those who fear confidentiality is coming before care, and that it should be the duty of agencies to share information where it is in the interest of the patient and will lead to the correct treatment.
At the same time her review underlines the real risk of clinicians basing their decisions on inadequate information – risks multiply when there is poor sharing of information between care teams.
The report finds that some NHS managers are “unduly restrictive” with information for fear that their organisation will be fined for breaching data protection laws.
It also says that people’s lack of access to their own records causes “great frustration”.
The long list of recommendations includes a call for all letters, emails and other communications that health and social care teams draw up on a patient’s care should be copied over to the patient.
The former principal of Somerville College, Oxford, has long been one of the most important figures in the health service in Oxfordshire.
As chairman of Oxford University Hospitals NHS Trust, she is responsible for the conduct of the trust, for managing the board and for appointing and reviewing the work of the chief executive and the other executive directors.
When the Health Service Journal decided to compile a list of 50 inspirational women, Dame Fiona’s name was among them.
But it is her work as a respected psychiatrist and psychotherapist that has involved the 72-year-old in the ongoing attempts to nail the issue of patient confidentiality.
Back in 1996 she chaired a major review on the use of patient-identifiable data. One of her recommendations led to the creation of so called Caldicott Guardians, staff given specific responsibility about sharing identifiable data in the NHS and Social Services.
In 2012 she received a new commission from the then Health Secretary, Andrew Lansley.
Dame Fiona said: “The opportunity to undertake a further useful piece of work, affecting the delivery of the best care possible to our population and reassuring them that their information is in safe hands, was for me irresistible.
“The challenge was to protect confidential information but also to ensure that, when it is in the patients’ best interest, that information is shared.
“It is important that when people come to the John Radcliffe Hospital from their GP that our people here have all the relevant information.
“What we have found is that with health and safety care, there is a problem with the sharing of information across organisation boundaries.”
Given the scale of the task, it was no surprise that the report has taken longer than expected.
She said: “I was asked to set up a panel of independent, expert people to look at the evidence and report to ministers by 2012. That proved an impossible time scale.”
Dame Fiona’s message to Government is clear: “Every citizen should feel confident that information about health is securely safeguarded and shared appropriately when that is in their interest.
“For too long, people have hidden behind the obscurity of the Data Protection Act or alleged rules of information governance in order to avoid taking decisions that benefit the patient. A rebalancing of sharing and protecting information is urgently needed in the patients’ and service users’ interests.”
Plans to share patient information electronically date back to the Blair Government’s now-axed NHS National Programme for IT.
This is now viewed as one of the most costly fiascos in NHS history, with total cost being put at £9.8bn.
But the big issue remains as to whether the NHS is over-concerned with protecting confidentiality, leading to patients being put at needless risk through clinicians being denied vital medical information.
The need for a cultural change in the NHS was made all the more urgent to her, with the damning Francis Report on the Mid Staffordshire NHS Foundation Trust appearing as she was writing her own report.
She said: “Patients do make assumptions about information sharing.
“When they come to hospital, they think everyone knows about their history. Actually they do not know. The secretary of state has made it clear patients do have the right to have their information shared.”
The sharing of information is particularly relevant to meeting the growing needs of the elderly population, she says, not least because of boundaries that already exist between health and social care.
Health Secretary Jeremy Hunt said he found the lack of communication across the NHS “completely shocking” and disclosed that 11 people died last year after being given the wrong medication.
He believed most NHS users would be astonished that their information does not regularly pass between GPs and hospitals.
For him the big challenges facing the NHS cannot be resolved unless the service becomes “more ambitious and enlightened” about sharing information.
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