Giving patients access to their health records is a sign of a modern NHS and will encourage engagement, but the opportunities and technology available must be used properly, says Ara Darzi

Giving patients electronic access to their medical records is a vital step in efforts to modernise the NHS. In part, it will help ensure the records are up to date and accurate, and allow patients to book appointments and order prescriptions – but it is also a key means to encourage them to 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 make the tottering NHS sustainable once more. IT is not, however, an end in itself.

Ara Darzi

‘Small scale successes in patient access to electronic records have not diffused widely through the health service’

IT gives us a tool to deliver better, safer care. Technology and innovation are rightly given special mention in the NHS Five Year Forward View. Now the National Information Board has published its framework for action to speed up the arrival of a truly digital NHS, delivering the “21st century, personalised healthcare” that Jeremy Hunt promised this week.   

At the centre of the framework is a bold commitment to give patients access to their full medical record by 2018.

We know that, around the world, pioneers from the Veterans Administration in the US to the health service in Denmark provide a model of introducing patients to their own data. But engaging patients has not proved easy.

As the Sowerby commission – a group of experts at the Institute of Global Health Innovation at Imperial College London, which I lead – reported earlier this year, Kaiser Permanente in the US faced difficulties getting equal uptake among ethnic minorities, where use of broadband and smartphones was lower.

‘Inviting patients to access their records is not enough – the health service must also empower people to make use of them’

In the NHS, small scale successes in patient access to electronic records have not diffused widely through the health service. Providers have had other priorities, and the basic data has not always been there.

Meanwhile, sceptics have questioned whether patients really can benefit from access to their records. A recent systematic review showed that the impact on quality is uncertain, with very limited benefit seen on patient outcomes.

Maximising health benefits

Health benefits to patients from accessing and using their own medical data cannot be simply willed into existence. They are distinct from the benefits of, for example, appointment booking. Inviting patients to access their records is not enough – the health service must also empower people to make use of them. 

‘Communities should take the lead in creating apps and other means of accessing records that are customised to the needs of patient groups’

Patients need to gain new capabilities so they can use the new information to make their own decisions. They should also be shaping its release, not simply waiting for the floodgates to open. 

Communities of interested patients and carers, especially those accustomed to self-management of their condition, should take the lead in creating apps and other means of accessing records that are customised to the needs of patient groups.

The Sowerby commission suggested last June, and the NIB has now confirmed, that a digital “Redbook” – a child’s health record for parents – is a great place to start. Other grassroots efforts should begin right away.

It is often said that health information can follow the path of financial data. While this may be true for simple transactions, the ambition in the NHS is much greater. 

Big data’s promise

If we want to help people be healthier through information, we need to do more than provide data. Online banking may help a customer save money – but only when combined with goal setting, careful budgeting and consistent monitoring, which require personal commitment and effort. Simply getting a record of our spending, or our medical history, is not enough.

Clinicians will also need to see that data sharing delivers on its promise. IT is frequently claimed to make patient care safer, but systems can also obstruct and cause error.

When patients are generating data and expecting it to be integrated into a consultation with their doctor, or when a doctor can access an integrated digital care record, they need to see how their task is made easier, not more complex. Too often, data is missing, poorly presented or hidden behind different systems with different log ins.

The development of the digital NHS holds out great promise for securing the transformation in care envisioned in the forward view. It will help put patients at the centre of care, develop “big data” techniques and speed up progress to the next breakthroughs in medical science.

But the NHS must build and sustain public trust in these efforts. If it fails in that task, we risk squandering the huge gains the digital revolution could bring.

Lord Ara Darzi is a surgeon, director of the Institute of Global Health Innovation and was a Labour health minister (2007-09)