Unleash the Data! Why Patients Need the NHS to Set Their Data Free

28/10/2012 18:15 GMT | Updated 28/12/2012 10:12 GMT

Last week Tim Kelsey, the NHS's new (and first ever) national director for patients and information, said that he should be sacked if the UK's healthcare system doesn't undergo a data revolution under his leadership.

His vision is exciting: unleashing data throughout the NHS to reveal brilliant and awful performance, to underpin better analysis, and to encourage developers to make new apps to help patients and clinicians.

It's high time this vision became reality. And I really hope he doesn't need to sack himself.

Clever use of data has transformed many aspects of our lives. It underpins modern traffic control, airline booking and weather forecasting. It has vastly improved my ability to find my way around London. It even ensures that my local supermarket has enough picnic supplies on hot days.

The potential in health is absolutely enormous. With free-flowing and reliable data we could better understand the causes of illness, identify the best ways to treat, and eliminate many of the irritating inefficiencies that today seem to just be part of being ill.

The NHS is simultaneously data-rich and data-poor. On the plus side, the NHS has decades of records each linked to a single NHS number. On the minus side, however, the NHS also has thousands of incompatible IT systems and inconsistent reporting formats. Tim Kelsey has a big challenge ahead of him.

It's crucial that he continues to aim high. The bare minimum of progress would involve patients being able to see their own data online. This would mean patients with internet access could refer back to things that their GP had recommended, could check their results and read hospital letters, and could even help point out any mistakes or misunderstandings of their situation. Better still would be the ability for patients to edit their record - not to delete

anything, but rather to add comments where they wanted to, much like 'track changes' in a document.

But real change will only be catalysed when patient data is unlocked in such a way as to flow seamlessly between providers, both inside and outside the NHS. If a patient were able to give permission (really easily) for their data to be seen by specified third parties, that would really drive innovation. It would help innovative providers to build software and new approaches that help patients manage their condition, consult their clinicians, and monitor progress.

In case policy-makers are in any doubt about the demand for this functionality from healthcare providers: I know for a fact it would be used. At DrThom, for example, true data flows would mean we could turbo-charge our remote management of long-term conditions.

We currently offer an innovative remote management service, which helps patients manage their asthma by giving advice and treatment over the telephone, internet and through the post. Our patients find it more convenient and helpful than alternative treatment options, and we have growing evidence that they are taking better care of their health than before they joined the service. However, in order to ensure patient safety we have to be very careful about which patients we accept for this service. If there's any question that it might not be the right thing for the patient, our doctors decline the patient's application.

Since none of our 500,000 patients can currently give us permission to see their own GP records - no matter how much they want to - we are forced to decline applications from many people who might actually be good candidates for remote management. If these patients could let us see their data, we could consider accepting them into the remote management service. (Of course, we would share their data back with their GPs if they wanted us to - in fact, we already do this.)

Many clinicians and managers have helped make major strides in improving data, including digitising records, creating comprehensive drug histories, and spending countless hours coding aspects of patients' stories into their computers. Now we need this captive data to be unleashed. We need patients to have real control over it: to see it, to edit it, and to direct it wherever they want to receive care.