NHS is yet to capture the wealth of the net

“OMG I just got a text from the NHS reminding me of a hospital appointment in a few days time with a number to call if I can’t make it,” one happy Twitter user named “Phodetheus”, or Gary Burfield-Wallis, wrote last Friday. Seconds later, still on his iPhone in the centre of Crawley, Phodetheus tweeted again: “Seems the NHS are getting it together, good for them.”

There is an emerging patient voice which you can see is starting to disrupt the NHS

Unfortunately his observations on the digital savvy of the NHS are not widely shared in the service.

The Department of Health last year commissioned Dr Foster Intelligence executive chair Tim Kelsey and policy consultant Hilary Rowell to talk to managers and policy makers about the issue - what should happen to make it work.

Their as yet unpublished report, released to HSJ in response to a freedom of information request, is forward looking, but is gently critical of digital progress and competence.

It says primary care trusts “feel that their access to the vision, skills and capacity is currently limited”. And in general, “there is limited awareness or understanding of digital technologies and the opportunities they offer”.

It says: “There is increasing interest but many feel they lack the competence to drive such initiatives.”

The report, Information, Insight and Interaction, says PCTs should lead but need more support from the centre.

NHS Choices “is not set up to deliver real value for PCTs”; there is “little if any awareness” of HealthSpace, the personal health record portal; and NHS Direct is “perceived to be expensive and some PCTs have or are planning to set up their own call centres”, it says.

The report recommends instead creating one national digital agency to provide this help. It would run a new “national multichannel ‘front door’ to the NHS”.

The recommendation has not been implemented.

The report was premised on the fact that much more information about NHS services would be made available to populate the websites. A year on, Mr Kelsey is clear even this barrier has not been crossed.

His focus is now sharply on making available information which could be used to pursue more efficient, effective services - as well as promoting digital engagement. The concern is backed by a strong push for the public sector to be more open with its data.

Dr Foster, which Mr Kelsey founded 10 years ago and is leaving in May, built its business on analysing data about hospital services. He believes the failure of the past decade has been in not unlocking primary and community care.

That is now required to highlight poor providers and, more importantly, having been linked to hospital episodes, to analyse and overhaul care pathways. Savings need to be made between the boundaries of care episodes and organisations, NHS chief executive Sir David Nicholson has urged.

Aspirations for GPs to be fundholding commissioners will give it further significance.

Mr Kelsey says: “Dr Foster has been on a journey for the past 10 years, and the NHS has been on a journey, but we are still talking about hospitals and that isn’t good enough.”

QIPP imperative

Data will be vital to the NHS quality, innovation, productivity and prevention - QIPP - programme, he says, particularly because of pathways.

 “At the moment [national director for improvement and efficiency] Jim Easton is asking the service to deliver a systemic change in culture when it’s got one eye with a patch on it,” says Mr Kelsey.

The requirement for primary care providers to publish quality accounts next year - with measures of their effectiveness and safety - adds urgency.

The focus is on the NHS Information Centre, which has the job of making data available.

Mr Kelsey says: “If I was chief executive of the Information Centre I would be feeling that I was in a very hot seat. It was set up to be a clearing house for the data that was going to power the quality revolution and I don’t think that has happened. That’s something the DH and the [Information Centre] need to get a grip on.”

Mr Kelsey says those providing no information or unusable information need to be better held to account.

He says it requires a shift in the authority held by the body responsible for setting the standards: “It needs real clout so people feel the heat when they provide unusable data.”

A sub-group of the national quality board is working on an NHS quality information strategy with a remit to look at “gaps” in information and “the roles and responsibilities of the current bodies involved”.

But, as well as highlighting the need for better information, investment cuts could easily undermine parts of digital NHS work. PCTs will find it difficult to invest in areas without well proven and short term gains.

Sir John Oldham, GP and QIPP lead for long term conditions and urgent care, says improving self care and therefore cutting demand relies on digital services. Patients need to be given “digital prescriptions” for their condition telling them what information to access and where it is, he says.

More ambitious digital care approaches - such as remote health checks, monitoring and management - may not provide significant short term improvement but, Sir John says, have to be pursued.

He says: “Beyond the immediate QIPP period we will have a 262 per cent increase in the number of people over 65. Unless we empower them with the access to knowledge to maximise management of their own conditions the healthcare system is not sustainable.

“Shortly the people in the over-65 category will be the Facebook generation - they’ve grown up with social media - and that will be the norm. We need [to] recognise those trends now.”

NHS Central Lancashire chief executive Joe Rafferty, one of those interviewed for the DH report, says failing to understand and invest in digital services will quickly undermine the NHS.

He says: “It’s an awkward time to do it - it takes a real act of faith to invest in something that’s got a longer lead in time, and people still are not clear

how to do this. But we will lose out if we don’t take the role of information seriously.”

He says the NHS had been “slow to realise” the changes the internet brought to other industries, such as banking and flight booking.

Change is coming

Mr Rafferty emphasises that digital communication will bring change whether the NHS seeks it and supports it or not, and probably soon.

“If you look at sectors where information has changed the relationship with services it is characterised by a tipping point - then it happens very quickly,” he says.

The tipping point may not have been reached but GP Paul Hodgkin, who set up and runs the website Patient Opinion, where dozens of patients comment weekly on named NHS services, believes it is around the corner.

Patient experience and feedback have been a cause célèbre for the government but have as yet failed to shake or scar the service.

The anonymous blog of a long term patient last year drew widespread media coverage merely for photographing his unappealing hospital meals, and sarcastically challenging readers to identify them.

Dr  Hodgkin says: “Most of the debate around patient experience and feedback is coming from an NHS point of view, but there is an emerging voice which you can see is starting to disrupt the NHS.”

When Dr Foster ranked Basildon Hospital as the worst in the country last year, to huge publicity, it went unnoticed that only 50 per cent of patients who commented on NHS Choices say they would recommend it to a friend. For top-ranked University College Hospital in London the figure is 81 per cent.

One lesson from both Dr Foster’s work - shaming trusts with figures - and that of Patient Opinion - publishing patients’ sometimes horrific stories - are that many NHS organisations and staff still have to grow thicker skins.

Dr Hodgkin recalls his experiences of persuading trusts to confront their own feedback: “Initially they think it’s great as the first comments come in and they’re positive - as they usually are. Then they get a bad one and think the sky is going to fall in,” he said.

“We tell them. ‘It’s fine - write a response that looks like it is written by a human being. That will do your image more good than all the glossy leaflets you can put out.’ In time they see that and the sky doesn’t fall in, but I cannot overstate how much of a learning curve it is for the NHS.”