The coming together of community

This is no easy task. Right now many providers of these services are contemplating their futures - whether to stand alone or as part of a merged organisation, one usually acquired by a mental health or acute provider. Either way, the problem is that organisational form could be an unhelpful distraction to the successful delivery of healthcare. To paraphrase Bill Clinton’s campaign phrase, “it’s the system, stupid”.

Central to the system is the accuracy and relevance of patient data. It may be seen as a dull component but that doesn’t make it unnecessary or diminish the fact that it is a key aspect of the many challenges which the delivery of flourishing community services poses. Of course, more fundamental are achieving clarity of vision, strategy and purpose as the underpinning requirements for effective community services - but all go hand in hand.

Currently there are so many holes and gaps in the system that it is difficult to know where to start. A few health economies have bold plans and are making the necessary investment in IT infrastructure to ensure that some barriers can be overcome. However, this will not only take financial commitment, but will require a mindset shift for many and a significant investment of time to iron out inevitable glitches.

The system will only work well when relationships on the ground, across organisations, are strong and teams move beyond rules and regulations to do the best for the patient. Many organisations are having to make this organisational development journey in a relatively short time - and my fear is that the cultural shift needed for success may take a little longer.

I can think of at least one locality where two community services delivered from one site require patients to register twice and where the two systems - housed a few yards apart - do not speak to each other. That metaphor can be further extended into the gaps between primary and secondary care in some parts of the country.

Currently there is no single IT system which spans secondary and primary care, let alone social care. In the community much of the data still exists in manual form - one of the royal colleges is even asking its members to continue collecting information manually. Such a move only serves to duplicate what is keyed into the computer system!

The entrenchment of silo working is also a risk where different parts of the system insist on having their own sets of data. That’s why it’s a relief to note that there are national initiatives in place now to get community providers to record information in the same consistent way. At least, thanks to the “community information data set”, providers have until April 2014 to meet the standard.  

Even when data is collected different actors are divided by a common language – as there is no agreed taxonomy which can be applied across the system. For example, in one area, 70 per cent of patients who go through the medical assessment unit have their activity recorded to general medicine which doesn’t really mean much when you’re trying to understand the impact at a system level. However as organisations mature and more acute trusts acquire and work closely with community services this will improve.

Information, and therefore data, also tends to be based around organisations and is not organised through pathways of care. In order to make the leap to “patient data utopia” we need to shift our thinking from organisation to pathway - or in some cases, an episode of care. The most forward-thinking organisations are investing in handheld devices for their staff which certainly help with real-time updating. However, duplication is inevitable as staff are required to leave notes in patients’ houses for continuity of care, and the very nature of their community work creates connectivity issues.

A more fundamental question is where the data actually needs to move? We talk about the data as needing to “follow” the patient during their care pathway, but in reality this actually means the relevant information needs to be available to the individual, their carers, their clinicians and health and social care “workers” at the right decision points and interventions in the pathway. 

The data itself doesn’t need to move and the danger that must be avoided is where each clinician or social worker feels they need their system to hold a copy of the patients’ data which they feel is relevant to the decisions they feel accountable for making. A starting point would be to begin to reference it together and ‘point’ or ‘index’ the information together and simplify the consents and governance required.

So there are clearly a variety of sticking points in the current system, but it doesn’t have to be this way. Some ingredients for success might revolve around creating sensible, clear information governance - allowing individuals and carers to give their consent and fully understand the implications.

It should also be possible to develop single integrated sets of information in localities. After all, why wait for national guidance, and why try to boil the ocean?

And what about creating a data and information centric approach? The citizen has been put at the heart of the health and care system; we need to put their data sets at the heart of the care system to support them and foster the inevitable culture change required.

Boldest of all, we must provide access to citizens and carers to check and improve the information held about them.

Professor Hilary Thomas is a partner in KPMG’s healthcare advisory team