Revolting people

The latest consultation on an information strategy for the NHS opens with a bold claim. “Much of the frustration within today’s care system has, at its root, information,” it says.

Not lack of money. Not poor structures. But having to repeat information, to hang around for test results, and “being unable to compare one service with another.”

Having identified this problem, ‘Liberating the NHS: an information revolution’ goes on to say that what is needed is information that puts people in control.

The past does not exist

This has the welcome effect of delivering a ringing endorsement of the importance of information to the NHS, and of the importance of the people who provide it.

The paper says there is “a need to raise standards by making informatics development part of core planning for health and care organisations” and that IT professionals should be given new skills to deliver this.

However, the paper makes it clear that it has no money behind it. Indeed, it argues that since digital technology, “especially when integrated with wider service design” has the potential to deliver greater efficiency, “the information revolution should, ultimately, pay for itself.”

Another, bigger, oddity is that while the paper makes several references to “not starting from scratch”, its building blocks are not the ones that long-term observers of healthcare informatics might expect.

As the first comment on E-Health Insider’s news story about the paper pointed out, it makes no mention of the Korner Reports of the 1970s. Nor does it mention the NHS information strategies of the 1990s.

So there is no mention of Information for Health, which led to the ERDIP programme to demonstrate how electronic records could be used in healthcare – and to explore information access by patients.

When ‘An information revolution’ looks for an example of sharing data with service users, it turns to local government.

When it promises an extension of existing initiatives, such as clinical dashboards or Patient Reported Outcome Measures, it does so without referencing the Darzi report that launched them.

Even if we’re building on it

The things that are really conspicuous by their absence, however, are the National Programme for IT in the NHS and the NHS Connecting for Health agency.

Plus, the idea that motivated both: that to get better information in the NHS you need integrated electronic record systems.

The paper makes almost no mention of IT systems, even though it says several times that “the most important source of data is the patient or service user’s record, generated at the point of care”.

This, it emphasises, should be the foundation of all the information in use across the NHS and other services.

In a tacit shift away from the national programme approach, the paper points out that “at present, there is no single, overall record of a person’s entire health and care history” – but doesn’t propose to change this.

Instead, it says a “one size fits all approach is unlikely” to work and attention instead needs to be paid to the “various records” in use across health and social care.

The paper wants to see data recorded more accurately and put into well-structured records that all use the NHS Number as a unique identifier.

Then, in a further shift away from the national programme approach, it says there should be “interoperability” so information can flow “freely and meaningfully” through the system.

The new NHS Commissioning Board is given the job of setting and maintaining a portfolio of information standards so this happens in the NHS, while the DH will do the same for public health and social care.

Finally, as predicted by the DH’s arms length bodies review, the paper says the NHS Information Centre should have a big new role as the repository for health and social care data.

Details to be confirmed

Again, the paper’s determined refusal to build on the past without making reference to it, creates some oddities.

For example, it says that “some parts of the record will need to be highly structured”, and that “name(s), date of birth, addresses and so forth will need to be stored once in a structured form and only re-entered if there are changes.”

Microsoft did a lot of work on this kind of structuring as part of the Common User Interface Programme that was part of its Enterprise wide Agreement with the NHS.

Yet it stopped with the EwA was axed this spring, and the consultation does not say who might take it up.

The paper also says that “the information strategy will need to take a view of how current systems and services can be used to help drive the information revolution.”

It then lists a set of services, including the Personal Demographics Service, Choose and Book and other CfH programmes, without saying that is what they are, or how they will be taken forward.

And it talks about the need to generate information from aggregated data without mentioning the Secondary Uses Service; which was meant to do just that.

The focus on records rather than on a record also means that patients are promised “online access to the records held by their GP and, over time, to the records held by all providers.”

Over time, the paper also wants to see these records used for transactions, so patients can communicate with providers online and exchange information, such as health status and test results.

However, there is no mention of the HealthSpace portal that was, again, meant to let patients do just this, while viewing their Summary Care Record (yet another project that fails to get a mention).

Pros and cons

On the upside, ‘An information revolution’ sets out a clear direction for the use of information in the NHS.

If much of that direction is familiar, it also provides some welcome clarity about the point of the journey: which is to drive commissioners and clinicians into a new relationship with patients, in which patients have more control.

It also provides a bracing sense that health secretary Andrew Lansley wants change and not to hear reasons for not bringing it about.

On the downside, the paper fails to acknowledge the information strategies of the past and to attempt to learn from what was good and bad about them, about what worked and did not work, and why that might have been.

It also fails to acknowledge the decade-long attempt to deliver integrated electronic record systems to the NHS as the basis for the patient records it wants to use as the source of information in and about the health service.

Finally, it leaves a lot of detail to be decided at the outcome of the consultation. The 34 questions posed at the end of the 70 page document suggest that the DH is eager for feedback – or that a lot of detail has to be worked through before January.