Why doesn't the NHS know how many patients have chemotherapy?

Why doesn't the NHS know how many patients have chemotherapy? Tim Kelsey, NHS director of patients and information, believes big data can transform the performance of the NHS.

Whether it's picking up a weekly grocery shop or booking a holiday, online transactions are the stuff of everyday life, but too often the health service operates as if the technological revolution never happened.

"We have had this revolution in the rest of our lives, which has been a combination of putting us in control, making us do more of the clerical work which we thoroughly enjoy, basically rationalising the costs and old ways of doing things," said Tim Kelsey, the first NHS national director for patients and information. "It still shocks and surprises me that doctors – a group of extremely intelligent professionals – will do all this online stuff, be among the most vigilant users of TripAdvisor, and then turn up at the NHS and nothing is there."

Kelsey says he sees obvious lessons for modernising NHS services from other industries, such as finance and aviation, where the use of data and technology has led to a huge increase customer satisfaction and a vast cut in costs. Figures from the International Air Transport Association show the increase in paperless travel from 19% in 2004 to 100% by 2008 is saving its 240 member airlines up to £2bn a year. Across the wider air industry, the association estimates the figure to be £9bn.

There's equally good evidence for such savings in healthcare, Kelsey claims. The Veterans Administration, a fully digitised health system for former US military service personnel, has cut bed days by 25% by automating some processes and enabling patients to do more for themselves.

These are significant gains: one of the most persuasive arguments in favour of using data and innovative technology within the NHS is to help solve the problem of a predicted £30bn funding gap.

"I think over the next five to 10 years – which is the sort of time period we are talking about for the £30bn deficit – I would be betting we will be targeting about half of that through savings generated by technology productivity." Whether Kelsey's assumption is right will become apparent this autumn, when the results of NHS England's detailed analysis of technology and data across the health system are finalised.

Deploying technology and generating better data is not first and foremost about saving money, Kelsey claimed, but instead about improving the overall quality of healthcare.

"Until now, we have not collected data which would tell us how many people are treated with chemotherapy in the NHS – quite apart from whether they are treated well or badly," he said. "The famous example of the cardiac surgeons, who published data on themselves and as a result found that mortality rates declined by an average of a third, is not actually a story or about good or bad doctors. It's really a story about how, through better use of data, the cardiac community was able to move the curve upwards. It was that the whole lot of them got better."

Earlier this summer Kelsey announced an agreement between NHS England, the British Medical Association and the Royal College of General Practitioners to extract data from primary care and linking it with hospital data. "For the first time anywhere in the world clinicians and patients in England will be able to monitor the outcomes across the pathway of care, in so far as it travels between primary care and hospitals. That's a massive breakthrough," he explained.

Though the cost of investing in data and technology is often claimed to be prohibitive, the primary care is already digitised. NHS England is focusing on giving patients online access to their GP record, and the ability to book a prescription online.

Hospitals, however, are at varying stages of digitisation, largely because the failed Connecting for Health scheme did not manage to link medical records across secondary care. Still only 12% of hospitals have an e-prescribing system in place. But Kelsey says not a single hospital in the NHS should be failing to invest in data and technology today.

So what is the biggest hurdle to clear in modernising our NHS? "The obstacle is us," Kelsey says. "Us: if we are patients, not being passive recipients of variable quality care, [but] being much more demanding where we can. And doctors and managers being far less willing to accept working in a service which doesn't meet the standards they would expect in the rest of their lives."

Transparency has long been Kelsey's professional raison d'etre. He is the former government director of transparency and open data, and co-founder of Dr Foster, the online hospital guide which spearheaded the publication of comparative hospital death rates and other measures of healthcare quality.

So it comes as little surprise when Kelsey says the single most important thing he would like to achieve for the NHS is transparency over outcomes, in a healthcare system where data is used to improve services.

"I think the quality of data is fundamentally linked to the quality of health services," he said. "And although a lot of people can't quite see the connection, essentially it goes back to the basic reality that if you can't measure it, how the hell can you manage it?" Guardian Professional.