Dame Fiona Caldicott’s information governance review could usher in a new era in which patient data is seamlessly available across the NHS, says Daloni Carlisle

Read the case studies relating to this article here

When Graham Price’s wife Maureen developed dementia on top of her existing Parkinson’s disease in 2011, he asked herf consultant to send over clinic letters by email. Graham, you see, is blind.

It took over a year of battling bureaucracy and an appeal to the ombudsman before the hospital agreed.

“My wife had advanced dementia and I had no help and felt suicidal. I could get no information from the hospital. They hid behind the smoke screen of privacy and patient confidentiality. They said email is not secure,” he recalls.

‘The public cannot understand why, if they appear at hospital, the record of that treatment is not available to the entire group of staff with whom they interact’

“But as I pointed out, I have an email reader so I can read them myself. With letters, I have to take them to my neighbour or someone else to read. Then what about confidentiality? It is a nonsense. And when has the post been secure?

“The real issue for me was the indifference I met and how it keeps inequalities going. We have to challenge that. I am sure the consultant was a decent man and a good neurologist, but he was prepared to defend the indefensible.”

With Mrs Price now in a nursing home, Mr Price campaigns for better information sharing and took an active role in Dame Fiona Caldicott’s information governance review launched in April. His story serves to illustrate why health secretary Jeremy Hunt links information sharing to compassion, safety and quality in care.

“I was at Watford General Hospital recently,” says Mr Hunt. “The nurses there talked to me about an elderly lady with dementia who had bruises all over her face. They knew nothing about her. There was no medical history available to them, no medications. That simply cannot be in people’s interest.”

He compared this with Airedale Hospital where emergency department clinicians can see the GP record - as long as patients give their consent. If the patient is unconscious, they apply the same principle as they would to operating on someone who is unable to give consent.

“The doctors and nurses at Airedale told me that no-one has refused consent,” he says. “This is part of the compassionate care agenda, the quality agenda and the safety agenda.”

Mr Price’s story is also, says Dame Fiona, a striking example of how the NHS has failed to get the balance right between protecting patient confidentiality and sharing information for the benefit of patients. This has to change.

Change of emphasis

“The review heard from citizens and they want more information sharing,” she says. “In particular, they cannot understand why, if they appear at hospital, the record of that treatment is not available to the entire group of staff with whom they interact.

“They want more joining up of systems so that information is available to those looking after patients.”

They also want their information kept safe; they want to be asked for their permission to share it; and despite supporting research, they have reservations about giving researchers carte blanche in using their information.

As Dame Fiona says: “There is antipathy to information being used for other purposes such as running the health service unless they are aware of that happening.”

The information governance review, Information: to share or not to share? starts from the premise that citizens should feel confident their information is kept safe - and shared appropriately. As Dame Fiona’s introduction notes: “Unfortunately, that is not currently the case.”

Too often, information governance is seen as an impediment to sharing. Perhaps, though, it would be more accurate to say that it is often not the case, as the case studies in this report show. When patients have a single record shared by GPs, hospitals and hospices, it can transform care.

But Dame Fiona does not underplay the important principles of data protection and patient confidentiality. Rather, she wants to see a change of balance between privacy and sharing.

So the review recommends a new Caldicott principle: the duty to share information can be as important as the duty to protect patient confidentiality.

This is an important change of emphasis and one that can only be achieved if staff feel supported by their employers, regulators and professional bodies and here Dame Fiona makes a plea: “We think the emphasis needs to be redrawn.

“If information governance could be part of clinical governance and not put on the side as a technical issue that would be a good thing.”

This would bring to the forefront a better understanding of how information sharing can support good patient care but it needs to take place within clear frameworks that govern consent, for example, or access to data and audit trails of who has looked at patient records. She wants to see trust boards take a greater responsibility for information sharing.

How consent works

There is also a large training and education agenda for healthcare professionals and managers.

“The review panel discovered that the mandatory training is often a ‘tick-box exercise’,” she says. “Health and social care professionals should be educated and not simply trained in effective policies and processes for sharing of information.

“This education should include a professional component explaining why there may be a duty to share information in the interests of the patient, as well as the legal aspects of the common law of confidentiality, the Data Protection Act and Human Rights Act.”

Another strand is public understanding. “There is a big agenda for public education,” says Dame Fiona. “We do not think the public is told nearly enough about how their health and social care information is used.”

She would like to see notices in GP and outpatient departments, for example, explaining how consent works, how their personal health data might be used and what the sanctions are for breaching confidentiality.

Dame Fiona has given the government a year to respond fully to her report, especially on some of the more complex issues around secondary uses, safe havens, using information in commissioning and for research. But the principle - and with it the culture around information sharing - looks set to change. Are you ready?

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Dr John Parry on why a records revamp is essential

The new Caldicott recommendations state that information sharing should be the norm whenever it is in the interest of the patient. Not only that, but information sharing should include the social care sector, and be in the full control of the patient.

The new guidance is undoubtedly very welcome and hopefully it will go far enough in easing the fears of those troubled by sharing. These concerns are valid and must be answered. Yet they should not, under any circumstance, disrupt the sharing of information where patients consent and where it directly enhances their care.

‘We need to remember that sharing is not new. There are numerous proven examples of record sharing working in practice’

The NHS is now at a stage where it wants, and needs, more information sharing. We all know that patient safety, care quality, outcomes and user experience are enhanced by it.

Information sharing will drive improved efficiency by reducing the need for duplicate tests, providing the basis for consistent decision support and reducing uncertainty of diagnosis and care requirements.

Multidisciplinary care pathways require clinical record sharing. The detailed care record ensures that clinical elements are not missed, that episodes or diagnoses that may not seem relevant are available to support holistic care, and provides the mode of “transport” along integrated care pathways.

However, many recent initiatives for data sharing have focused on single conditions, which does not reflect real patients’ real lives, and is an inadequate test of care for patients with multiple long-term conditions.

A more comprehensive approach to care planning, with a holistic view of the patient and greater accessibility to care records, is needed to drive change in the delivery of care.

We need to remember that sharing is not new. There are numerous proven examples of record sharing working in practice:

  • E-consultations have shown the success of using the detailed care record in lieu of patient referral for clinical advice.
  • Acute hospital and pharmacy clinicians
  • have reduced prescribing errors and improved medicines optimisation by viewing GP
  • records.
  • Acute and primary care providers using the same system have been able to utilise a longitudinal care record for patients.
  • Prisons have been able to ensure the continuity of care as prisoners move around the system.
  • To support end of life pathways.

The time to empower patients to understand and control their records is now. It’s necessary to support the legitimising of the shared record, and to enable patients to benefit directly from better information. Sharing of data for clinical care and for research must now become standard practice in NHS care.

Dr John Parry is a GP and clinical director, TPP. www.tpp-uk.com