These opportunities sit against a backdrop where many everyday experiences within health and care are more analogue than digital – medical records on paper, faxes and letters in the post. These more antiquated methods of sharing information often mean that the NHS is unable to ‘join the dots’ successfully – which can be a source of frustration for patients when they have to repeat their medical history to every professional they encounter. Sadly, there are too many cases where this also means that people experience uncoordinated care, or poorer quality care and outcomes. Data sharing really does impact efficiency, quality and safety.
Programmes to improve patient data-sharing are often characterised by ‘multiple multiples’. In any local area, there are multiple organisations employing multiple professionals, with multiple different IT system suppliers. It is a complex situation, and yet, at the centre there’s always the individual – the patient needing care.
The Bristol-based programme Connecting Care, JUYI in Gloucestershire and CHIE in Hampshire are just three examples of programmes that operate within the ‘multiple multiples’. In common with many other parts of the country, they have all been working on data-sharing for individual patient care – bringing together information such as medications, appointments, plans for care, or hospital stays. To the clinicians who now routinely use the shared care records developed by these programmes, the data-sharing has been like switching a light on in a dark room.
These programmes, within the context of ‘multiple multiples’, face particular challenges. There are certainly some very real technical ones – particularly around improving interoperability and standard information models, or influencing IT suppliers to ‘open up their systems’.
However, as challenging as the technical aspects can be, often it is the more personal, or cultural aspects that are central. Trust is critical. Trust from the public first and foremost. This can so easily be lost – and any national news or scandals, even if not directly related, can impact local data sharing. Trust is also vital between the different organisations involved in any data sharing. Sometimes progress can be slow, and this may be due to fears around legal complexities, or an organisational culture that may be wary of change, or that does not recognise the mutual benefits. Building trust and gaining traction can take significant time, resource and effort.
Delivering more widespread data sharing is incredibly complex at times, and the mix of issues, organisations and interests brings challenges. But overcoming these is vital if we are to deliver “high quality care for all” because after all, as the Twitter hashtag says, #datasaveslives.