Inside e-Health on how the NHS still struggles with messages about information

The debacle of HM Revenue and Customs’ lost data cast a long shadow over the health service in 2008, even as it identfied information as critical to all aspects of service modernisation. Jon Hoeksma says it will need to tackle both IT and public opinion challenges in 2009.

At the beginning of the year, the overwhelming theme for public sector IT looked set to be data security and public confidence in the government’s use and handling of personal data.

HM Revenue and Customs had lost the details of 25m child benefit claimants in the post in November 2007 and pressure groups and committees of MPs were clamouring for tougher penalties for reckless or malicious breaches of data protection laws. 

All government departments issued stern instructions to their agencies to sharpen up their act as the year went on. As late as September, NHS chief executive David Nicholson was telling health service chief executives to check that their organisations are encrypting all removable data.

Despite this, a string of stories about lost laptops and USB sticks containing patient data continued to appear in the press. Information Commissioner Richard Thomas recently described 2008 as a “year of data breaches”, with no fewer than 277 incidents reported to his office. The NHS proved itself a repeat offender, with more reported incidents than any other part of the public sector. 

Vital information 

The problem is that the NHS needs to collect, use and share information on everything from MRSA to bookings, prescriptions, treatments and quality. And it needs to do it more than it ever has before.

As 2008 went on, another theme to emerge ever more strongly from reports and reviews was that information and information sharing is absolutely essential, and must  underpin the higher quality service with more choice for patients, set out in the final report of Lord Darzi’s Next Stage Review in July.

The health service will also need to use information and information technology to deliver the extremely demanding additional efficiency savings now required of the NHS, as the economy slides deeper into recession. 

After a nearly a decade of record budget increases and falling productivity, the health service has got to deliver big efficiency improvements from a budget that is likely to start falling in real terms. Getting to grips with this much tougher financial environment is going to require painful and difficult choices.  It will also require new ways of working and providing services. 

The Health Informatics Review that accompanied the Darzi report, emphasised that instead of IT systems or solutions, the focus is now firmly on ‘informatics’, the application and use of information.

The Operating Framework for the NHS in England 2009-2010, was even clearer on this point, saying there must be a focus on senior managers and clinicians “leading and owning in the informatics agenda.” Too often, it says, informatics has failed to support adequately improvements in the quality of care.

Information for all

The NHS Reform Bill promised in December’s Queen’s Speech emphasised another area in which information and the technology to do it will have an increasingly important role to play in the future. It promises the NHS its first, ever written constitution, with new rights for patients that include “access to your own health records”, to choose a GP and to make choices about further treatment based on good information.

To help achieve this, the DH is planning a massive expansion of the HealthSpace patient portal, and summary care records in 2009.  The goal is to go from a handful of accounts at a few pilot sites to over 100,000 active users by year end.

While admirable, all of these objectives depend on a new compact between the citizen and government on the use of personal information. That compact must be based on confidence and trust. Data breaches undermine one, while the NHS is still giving out some mixed messages on the other.   

Although the proposed NHS constitution includes a new right to privacy and confidentiality, it will also make it easier for researchers to access patient information.  This has been criticised by patient information tzar Harry Cayton as “ethically unacceptable”.

So, as it enters 2009, the health service’s managers and informaticians have a number of challenges to face. They must make progress on using information to improve quality, choice and efficiency – and do it in straightened financial circumstances.

At the same time, they must ensure that staff not only understand the mechanics of how to use new systems, but what they are intended to achieve how to keep data secure. They will also need to take public opinion and patients with them. For the health service, most years are challenging in one way or another. 2009 may just be more challenging that most.