First published on www.digitalhealth.net
When you are on holiday do you play that ‘why?’ and ‘what if…’ game? For example in the USA on a recent holiday we were chatting about why foods are called different things in different countries. A quick poolside thumb poll had the list below as differences between the UK and USA, and we are sure there are more:
The only excuse we could come up with for why this happened was timing. These food stuffs were perhaps discovered at around the same time across the world and therefore no name was ever right or wrong, just more timely and geographically rich. The experience of being in a different country and seeing these new words for the same things adds a little nature of the exotic, particularly when the country speaks the same language (kind of).
But these differences speak to the single largest challenge that faces our digital health menu today: the challenge of interoperability and integration. When we talk about the delivery of a new healthcare paradigm we speak of the delivery of integrated care, a care delivery experience that places the patient at the centre and has no boundaries. But to achieve this requires information to mean the same thing to all those involved in its delivery. Where this isn’t possible we put in place a perpetually repeating health system; one where learning the parameters of a situation, of an illness, of a prescribed cure are repeated at each gateway to a different healthcare system. We don’t want an exotic patient experience we want an efficient and safe experience.
The journalist Geoffrey Williams once said, “You can’t understand one language until you understand at least two.” Goethe went even further claiming, “He who does not know foreign languages does not know anything about his own.” Moving healthcare delivery to a system-wide approach is the goal of over 50 (locally driven) digital initiatives in the NHS alone. The goal of an integrated health and care record is to provide access to, and translation of, multiple care languages. The pressure facing healthcare systems across the world today will only be resolved through integrated approaches that enable health and social care to work together to manage the front and back door to every major acute hospital in the system. A busy Accident and Emergency Department is no longer the problem that the acute hospital can resolve on its own, it is a system-wide issue that the geography has to resolve together. Access to information will unlock this resolution, but first we need to enable the way we refer to the healthcare to be shared.
For the last two decades sharing information between care settings has been a digital goal. In the late 1990s Hampshire became ‘famous’ for the delivery of an exemplar record sharing environment, linking access to information recorded in the ‘Exeter System’ to information in GP systems, to aid the delivery of healthcare regardless of the setting. The largest issue that stunted growth of this early pilot though was the quality of the data and the ability to index the information. The need for a common identifier across health systems was raised and the NHS Number mandated by a target date. It’s a shame that this would not be the last time the NHS number was mandated by a target date…
Jumping forward to 2017, the Irish health system delivered a unique EU-wide identifier for the delivery of healthcare to its citizens. Huge effort was put into delivering this in an agile manner at a limited cost, and today the number exists and is available but its actual implementation in healthcare delivery itself remains very patchy. We can also look at an example in Leeds today too. Having spoken to other healthcare jurisdictions, the Leeds Care Record has become well known throughout Europe as an example of local systems working together to achieve something quite remarkable. The Leeds Care Record is a platform that enables integration at a level beyond almost anywhere else in the NHS. Over 35 systems are able to share information in a controlled, secure and legitimate fashion. 111 GPs also benefit from having access to what is recorded about their patients’ hospital visit. They also share key elements of the GP record with the healthcare delivery system throughout the geography. And that word is where the Leeds Care Record does fail; it works for the geography of Leeds and so this isn’t integration, this is interoperability. In Leeds, information is shared through the same platform but the reference points for the delivery of care remain in the same ‘language’ of the originating care setting. The reliance is on the interpreter and their own understanding of the information.
Culture plays a huge part in how we create an interoperable health care system which digital supports. In his book Culture, Terry Eagleton tries to define what culture means to organisations. He has four areas that he believes are most relevant to creating the right culture: values, customs, beliefs and symbolic practices. None of these particularly speaks to a standardised way of operating and therefore, if we believe in culture being how we make things happen in an organisation, then interoperability will always be an area we strive to achieve.
In the same book Eagleton, who is from Ireland, notes that the postbox, an original integration tool, donates civilisation. However the fact that Ireland has painted its mailboxes the famous Ireland green denotes a culture, a difference to others. In Leeds we have many gold postboxes, a legacy of the London Olympics, when gold medal winners had the postbox closest to their home town painted gold as an honour. Again, culture flouting a standard.
As quickly as we can, we need to begin to agree nationally (and why not even globally) if we are to achieve integrated or interoperable healthcare systems. The standards to do this exist in so many ways already. Digital health doesn’t need changes to be made at the mega-vendor level, the systems need to adopt the standards and then innovate to exist in a ‘system of systems’ approach.
Maybe we need to use Eagleton’s four cultural reference points as starting points to creating a joint understanding of where we need to get to.
Values: The value of having integrated care has been made clear for decades. Digital leaders are still at the begging bowl though, seeking funding to deliver the necessary platforms that are required to enable information sharing. Information is now becoming more complex, faster in the way it changes and more encompassing of the healthcare experience and value needs to be placed on the innovation needed to achieve a truly interoperable healthcare system.
Customs: Local customs need to be protected but somehow we need to move from the clinical system paradigm. You know the one, where the clinician you have engaged loves the idea of a single system across the hospital, they feel it’s a great idea, but their additional one special system still needs to be protected as well. This has become known as the ‘one plus one’ clinical system and in a hospital it means we have one system, plus one for every adventurous clinician in the hospital.
Beliefs: We need the healthcare system to stand up for the belief it has in the delivery of integrated care. That belief will drive the ultimate understanding of what a system of systems digital solution can provide.
Symbolic practices: Perhaps in the NHS this is about to happen with the launch of the Local Health and Care Record Exemplars funding and a platform to enable lessons to be learned, standards to be tested at local levels (of five million population) and a real drive from the centre and from the ‘spokes’ to truly achieve this.
There has to be a hook to the original Bevan statement about the creation of the NHS, “Healthcare free at the point of contact”, so now we need data ‘free’ at the point of contact and this can only be achieved if we all have the same reference points.
Now, can I get some fries, I mean chips, I mean crisps, I mean home fries…