Reg Little talks to Dame Fiona Caldicott about her major National Health Service review

To many people it would have seemed a poisoned chalice from the hands of the Secretary of State for Health.

For who, with any knowledge of the NHS, would take on the job of sorting out the mess of patient confidentiality? Trying to find the right balance between protecting patient information, and ensuring it is shared when it really matters — when we are ill and in need of the right treatment — is, to say the least, a tricky business.

Plans to share patient information electronically date back to the Blair administration’s now-axed NHS National Programme for IT, now viewed as one of the most expensive fiascos in NHS history, with the total cost being put in the region of £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 when making their decisions. When the current coalition decided to again revisit the thorny issue of putting the protection of confidential information above our health, there was never much doubt who the Health Secretary was going to call — Dame Fiona Caldicott.

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 performance of the chief executive, and all the other executive directors, come to that.

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 socials services. Then, in 2012, she received a new commission from the then Health Secretary, Andrew Lansley. Despite all her Oxfordshire commitments, she decided it was an invitation she couldn’t turn down.

“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.”

Given the scale of the task, it was no surprise that the report has taken longer than anticipated. “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 timescale,” she said.

But it seems that the effort was worthwhile with the Government last month confirming that it is to accept all Dame Fiona’s recommendations, in a report which makes clear that when it comes to sharing or not sharing information the balance is not right. It will more than confirm the fears of those who maintain 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 — risk multiplies when there is a poor handover 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, also highlighting that people’s lack of access to their own records causes “great frustration”.

The lengthy 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 replicated for the patient. In the introduction to her report, Information: To Share or not to Share, she sets out the problem.

“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 patients’ and service users’ interests.” 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 report.

“Patients do make assumptions about information sharing. When they come to hospital, they think everyone knows about their history.

“Actually they do not know about their history. 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 the boundaries that already exist between health and social care. Health Secretary Mr 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 that most NHS users would be astonished that their information did not regularly pass between GPs and health service hospitals.

For him the big challenges facing the NHS cannot be resolved unless the health service becomes “more ambitious and enlightened” about sharing information. The aim is to ensure we are all know about how our health information is shared, while, if people don’t want their information shared, they will know how to object. At the same time, access to our own health and care records will be increased.

There is much to be thankful to Dame Fiona for. The Secretary of State has already shared one piece of information with her: she will be asked to oversee the implementation of her own recommendations as a fitting, if slightly harsh reward for the busy health trust chairman and Caldicott Guardian-in-chief.