Information is Power…..for some. Department of Health Information Strategy

If you have not read ‘the Power of Information’ – don’t. At least not until you have read the the Equality Analysis first – this is excellent – it gives a succinct summary of the strategy and follows this up with a well researched description of the challenges we face with regard to accessing and using health information.

It is no coincidence that the Equality Analysis has been co-produced with the support of a range of voluntary and user led organisations (page 20)

The ‘Power of Information’ is a response (para 1.3) to the consultation on Liberating the NHS: An Information Revolution and to the Information report produced by the NHS Future Forum. As the NHS Future Forum states (para 5.4):

“…..information technology is only part of the story about data sharing, and not the main part (my emphasis). Time and again it was put to us that the effectiveness with which information is shared is primarily a matter of culture and behaviour”

The strategy goes on to devote almost 90 pages to promoting a technical solution to information sharing – using information technology.

Of the 30 plus case studies in the strategy I reckon that 85% are concerned with IT led interventions – the majority of which are concerned with data sharing between professionals. This highlights the real challenge.

There are already plenty of examples of IT data storage projects out there.  But far fewer examples of projects that describe ways in which information can be shared systematically directly between people – professionals and patients – and even fewer that do not involve IT. The failure of the strategy to address this is one of its significant deficits.

The strategy is concerned with using information technology to:

• give all people access to their health records
• share information about individuals between health systems
• keep track of utilisation of services and interventions
• publish a more comprehensive and accessible range of performance and outcome data

What the Equality Analysis says:

• 9.2 million adults have never accessed the internet
• Those aged 65+ are much more likely to be offline than younger people – 60% of adults aged 65+ have never accessed the internet. Of the almost 17 million finished consultant episodes of people staying in hospital in 2010 the largest group (21.7%) were adults between the age of 60 to 74
• Only 15% of people living in deprived areas used online government services in 2009
• 40% of the UK population do not use online channels, including websites such as DirectGov and NHS Choices – see for example research conducted by the University of Bedforshire in 2010
• The average reading age of the UK population is 9 years.
• There is a risk that already excluded groups such as people with learning disabilities, gypsies and travellers will not benefit from access to health and care inforamation such as medical records to the same degree as the rest of the population.
• ‘a lack of primary care data in relation to ethnicity means we have no systematic data available for ethnic health inequalities’ (page 14)

In addition to deficits and challenges the Equalty Analysis also makes a strong case for positive solutions – particularly through those provided by collaborations with the voluntary and community sector.

“There is evidence from the Voluntary and Community Sector that partnershps between specialist VCS groups and GPs, Trusts and clinics help to improve patient understanding, choice, use and access to information and therefore the patient ability to manage conditions and make effective decisions. There is an opportunity to improve information sharing with these groups by encouraging commissioners of health and care services to work with community led and user-owned organisations, to reach people in ways they can engage with.”

This is followed by positive examples with regard to HIV and work with blind BME women. (pages 13/14)

Equality and the Power of Information

There are sections in the strategy that recognise the above issues. For example among the 90 pages there are two paragaphs which state:

• “we want information to benefit everyone and reduce (not increase0 health inequalities – with appropriate support for the many of us who need it in understanding and using information effectively – in particular we are clear that not being able to acces the internet should not be a barrier to information.” (para 4.1)
• “…the aim is for everyone to benefit ….this will mean that some of us will need extra support to use information as a core part of our care services” (para 4.15)

Unfortunately the above paragraphs are about as much detail as we get in the main strategy. Instead it devotes the rest of the document to detailed descriptions of universal IT led solutions.

It fails to sufficiently recognise the very specific and significant exclusions identified in the Equality Analysis and to propose in sufficient detail the actions that will be required to address them. It does not appear to have taken into account the Institute of Health Equities work on proportionate universalism.

There is a real risk – at a time of austerity – of further disenfranchising some of the most easily ignored and vulnerable communities; diverting energies to create a universalist model when we need to focus on bringing already discriminated groups up to the same level as the rest of us.

Key Issues

• Inequalities – I restate this because it is so important – an information strategy that does not prioritise work on excluded communities is a failed strategy and will worsen the inverse care law.

• Social Determinants of Health – I know that data sharing between health and social care is important but the document does not do enough to reach out to other sectors – housing, environment, employment etc. This will is perpetuate a siloed approach to health and wellbeing. There is a vague commitment to addressing this issue in the ‘long term’ in paragraph 5.52 – Local authorities and CCGs are grappling with these issues now!

• Voluntary and Community Sector The focus of the strategy is on data in the statutory sector – NHS and Social Care – there is a real danger that of excluding the voluntary and community sector here – and of also not giving sufficient value to the strong relationship offer that the sector brings.

• Relationships – As the Equality Impact Assessment makes clear ‘the power of information’ is not just about  individuals accessing their personal records, or having their prescriptions bar coded – its also about the relationships they develop with each other, their carers, professionals and other services. The starting point has to be service responses to specific need – by all means work to a set of principles around data sharing – but it is responses to people with needs in the circumstances that they live that matters.

What do you think?