With Nick Clegg recently promising that he will block the passage of the Health and Social Care Bill unless he is satisfied that the proposed changes are evolutionary and will not lead to a disruptive revolution, Andrew Lansley may be regretting the name given to his policy to improve the way that the vast amounts of information generated by the NHS are used.
But is the Information Revolution really revolutionary? A focus on the power of information within healthcare was already evident during the years of the Labour Government. It was Labour who in 2005 established the NHS Information Centre as the central, authoritative source of health and social care information and who in 2007 launched the NHS Choices website which promised to deliver “an information service fit for the 21st Century”.
So what does the Information Revolution mean for health? On the one hand it seeks to increase transparency and empower patients, putting them in control of information about their health and local services, thus allowing them to make informed choices about their treatment and hold the NHS to account. On the other hand the Information Revolution is about improving the way that information is used within the NHS, ensuring that clinicians have the information they need to make evidence-based decisions and providing commissioners with data to allow them to monitor outcomes and manage providers. The Government will therefore need to make the Information Revolution in the NHS a reality if the rest of its reforms are to be successful. Yet it faces a number of challenges in doing so.
The Government suggests that “the information revolution should, ultimately, pay for itself” – which is convenient given the lack of money available to pay for it. The Government sees its role as being to create a market in information by releasing vast amounts of previously unpublished data that the NHS already holds, thus leaving it to interested individuals and organisations to scrutinise and transform it into something more meaningful. But the Government may have underestimated the infrastructure that will need to be in place to allow this to happen.
One of the proposals at the centre of the strategy is to give patients and service users control over, and access to, their records online. However, the delivery of electronic patient records to date has often been challenging and costly. The reality in the NHS is that many patient records are still kept on paper or in disconnected systems across care settings and in different locations, while the quality of record keeping varies.
Most people agree that patients should have easy access to their medical records and be provided with high quality information to help them to make informed choices about their care and treatment. However, there is some scepticism about whether patients really want this level of choice and whether patients will use the reams of data the NHS publishes before choosing where to be treated. Questions also remain on whether the Information Revolution could compromise patient confidentiality and bodies such as the British Medical Association (BMA) have expressed concerns about the lack of detail in the Government’s proposal to adequately protect patient data.
The Information Revolution may be part of a vision of digital democracy and the empowered citizen. However, one of the challenges that the Government faces in implementing this policy is ensuring that it does not deepen health inequalities. The digital drive behind much of the Information Revolution could mean that the less digitally literate are left behind: the Government acknowledges that a fifth of adults in the UK have never used the internet. Unless these challenges are addressed the Information Revolution will only entrench the current situation where the most informed and most vocal patients are better able to navigate the complex health system and ensure that they receive the highest quality care.
So what does the Information Revolution mean for clinicians? Ultimately, Andrew Lansley hopes that collecting and publishing all of this data on outcomes in the NHS will reduce variation in the quality of care, as commissioners and providers are shamed into improving their performance. More fundamentally, the Government’s approach of ‘publish and improve’ (as opposed to ‘polish then publish,’ which was often the mantra used with public sector data) may lead to perverse behaviours. If partial or misleading information is placed in the public domain, then commissioners and providers may respond to this in a way which will enable them to avoid criticism, rather than necessarily improve health outcomes.
Much of the use of NHS information is common sense rather than revolutionary, which may prove a relief to Nick Clegg. It builds on existing trends in transparency of data, as well as the importance of clinical accountability in healthcare. Yet for the reforms to work, information also needs to have a disruptive influence, challenging existing professional behaviours and shaking up embedded patterns of health delivery and patient preference. That the NHS could make better use of the information it collects and holds is undeniable. Whether it can do so in a way which is cheap, protects confidentiality and is meaningful to patients is more debatable. An even bigger question is whether patients and healthcare professionals can be encouraged to use this information as they would do in other areas of the economy.
It is clear that initiating the Information Revolution is proving to be more problematic than the Department of Health perhaps envisaged. The Information Strategy is subject to continued delays, not all of which are related to the ‘pause’ in reform. Addressing information asymmetry is fundamental to making a market in healthcare work. When the Information Strategy is finally published, the Government will be hoping it has some clever (and cheap) answers.
A more comprehensive article on this topic is available here.