It is fundamentally important to create population level databases of records but there are risks, to patient confidentiality and data misuse. It is vital we find a solution supported by public confidence

Amid the catalogue of ill treatment and neglect exposed by the Francis inquiry into the Mid Staffordshire scandal, one case stood out. The death of Gillian Astbury, aged 66, was possibly the worst single example of the appalling care delivered by the trust.

‘Nurses failed in their most fundamental duty: to record that she was diabetic’

Ms Astbury, a diabetic, lapsed into a coma at Stafford Hospital after nurses failed to give her insulin. She died in April 2007 - ten days after being admitted with a fractured hip - from what the coroner described as “systemic failure in the most basic tenets of patient care: proper handovers between nursing shifts and proper record keeping”.

The nurses had failed in their most fundamental duty - to record that she was diabetic. In April – seven years after her death - the trust was fined £200,000 for breaching health and safety law.

Lethal record keeping

Failures of record keeping occur on a regular basis in the NHS, sometimes with lethal results. Had Ms Astbury had an electronic record detailing her diagnosis and medication available to her rotating shifts of nurses, she might be alive today.

Good records are as essential to good care as the thermometer and the stethoscope. But a record that can only be seen by one member of the healthcare team – the GP, say – is useless when the patient is admitted to the care of another, such as in hospital.

Yet this is how most medical records are currently organised – separated into siloes in a GP’s surgery, the hospital and the clinic. The barriers that divide them are partly technical and partly cultural.

‘Good records are as essential to good care as the thermometer and the stethoscope’

Simon Stevens, in his first major speech as chief executive of NHS England earlier this month, explained why sharing records is essential not only to provide safe treatment for individual patients, but also to improve care for the whole population.

He cited the example of the diabetes drug - which he did not name - linked to an increased risk of heart attacks which research has shown could have been identified over five years earlier than actually happened, had GP and hospital records been linked.

He also highlighted that the one in four cancer patients who are only diagnosed when they attend accident and emergency were done so too late and with a worse prognosis. This is why creating population level databases of records such as care.data is fundamentally important, as Mr Stevens said.

But there are risks – to patient confidentiality and from the potential misuse of data by private organisations. The failure to properly address these risks has badly damaged public confidence not only in care.data, but in the wider principle of record sharing which is essential to high quality modern medical care.

Rebuilding public confidence

After a year long investigation, the Sowerby Commission - a group of experts established by the Institute of Global Health Innovation at Imperial College London which I lead - has concluded that to rebuild that confidence, three measures must be put in place.

First, the data must be vigorously protected. Second, only NHS or accredited academic organisations should be given access to them and third, penalties must be imposed on NHS organisations for improper use.

No one should be identifiable from NHS data viewed outside the NHS.

‘We need to go further and give all patients a legal right of access to their electronic records’

Risks can never be wholly eliminated, but people whose data is lost or irresponsibly used should be able to claim compensation through the NHS Litigation Authority and the Care Quality Commission should maintain a mandatory public record of known data breaches, as is required by law in the US.

In addition, trusts that cannot show evidence of extensive use of electronic records – vital to maintain high standards of care - should be forced to pay higher insurance premiums, be marked down by the CQC and lose their training accreditation.

Health secretary Jeremy Hunt has pledged that all patients will have online access to their GP records by 2015.  But we need to go further and give all patients a legal right of access to their electronic records, in common with their existing right to their paper records, and to download and share them as they choose. 

This is essential, not only to ensure the records are up to date and accurate, but also to allow them to book appointments, order prescriptions and become more engaged in their care.

Harnessing the energy of patients and the public who have a unique interest in improving their own health is a huge untapped resource. It could be the make it or break it difference between an NHS that is sustainable and one that is not, as Mr Stevens noted in his speech.

Proof in the data

Locally, the introduction of record sharing schemes is already transforming the medical landscape by reducing errors and improving care.

In Scotland there has been a 40 per cent fall in amputations among diabetics, a 40 per cent increase in screening for diabetic retinopathy (a cause of blindness) and a reduction in foot ulcers, following establishment of the diabetes collaboration database, used to help manage the care of 288,000 patients.

‘The information contained in medical records has the power to improve care as much as any breakthrough drug’

When electronic prescribing data was fed back to staff at Birmingham University Hospital, the proportion of patients receiving antibiotics within agreed time limits rose from 30-40 per cent to 90 per cent, reducing their length of time in hospital

In Lanarkshire, introduction of the summary care record - a condensed version of the full record shared between GPs and hospitals - saved 23 patients from medication errors such as missed doses and administration of contra-indicated medicines.

The information contained in medical records has the power to improve care as much as any breakthrough drug. It is vital we find a way of using it that enjoys public support.

Lord Darzi is a surgeon and director of the Institute of Global Health Innovation. He was a Labour health minister from 2007-09. The Sowerby Commission report will be launched at a conference in London today.

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