06 February 2016

An #EHR4NI - towards a regional integrated digital health resource

"Electronic Health Record" - a phrase to strike fear into the stoutest of Clinical and IT hearts, especially if used in close proximity to the word "implementation". There is no doubt - let me make that very clear - that paper-based clinical records, and multiple disparate computer systems for the handling of data relating to patients, pose a significant barrier to the delivery of excellent clinical care. It is not that the doctors, nurses, AHPs etc actually delivering the care (we may come back to that "c" word at some point in a future blog, because it's a tricksy wee fecker that doesn't always play by the rules) are not trying their best, but we need to recognise that when we are dealing with patients in the health system, the outcomes are based more on how that system operates in real life rather than the noble intentions of practitioners, managers or even (shudder) politicians.
"Are you half wise?"

In Northern Ireland the majority of clinical systems coming into direct access with patients, at least in the hospital sector, are still based largely on paper charts. The sheer volume of data that is often captured in these charts is mind-blowing. But it's one thing to capture data; it's another to put it into a format where it can actually be used to deliver benefit. And the sad reality is that the more data we capture in paper based systems, the less useful it becomes.

A patient with multiple comorbidities or frequent contact with the health service over years, or who has even had one episode of being very unwell and needing a lot of medical or surgical care, can end up with a huge collection of notes, and the chances that anyone is going to be able to go through all that and distil the valuable information that will make a real difference in their next interaction rapidly decreases as the amount of paper piles up.

So computer based records would be the solution here? Not so fast, my intrepid coder friend - while in principle computerisation of medical records can be very useful, experience across the world has shown that if it's not designed and implemented properly, we can end up with a worse situation than we started with, as well as a gargantuan bill and some very angry people.

I need to be clear; the solution most definitely does involve computerisation, and it most definitely does involve creating a digital health record around our patients. But this needs to be done properly, and there are a number of areas that need special attention when we are embarking on such a trip - otherwise it becomes a trip-up. These have been well rehearsed before, so I'm not going to go into them in detail; suffice it to say that they involve issues with the system itself, the engagement of the supplier(s), the engagement of the staff who will be using the system, and how the system itself interacts directly and indirectly with the patients - those receiving the "care".

Northern Ireland already has experienced quite stellar success with its implementation of the NI Electronic Care Record (NIECR). This is essentially a unified portal allowing clinicians to access much of the information they need to deal with a patient via one single login. The change from the old days of multiple logins and over-reliance on the paper chart has been almost universally welcomed with superlatives of praise. My view is that this project succeeded so well because a/ this was a very juicy piece of low-hanging fruit; b/ we had a great team of people who really understood what needed to be delivered; and c/ we were able to achieve high levels of clinician involvement at an early stage of the process. This was a system designed from the coal-face upwards.

But it's a limited system - for example, there is very little information I as a doctor can input directly into the NIECR. I can't book or change appointments. My patients can't fix errors with their demographics or message me from home. It's just, basically, an electronic window into a subset of some of their clinical record. That's useful (very useful!), but it's only a very tentative first step. We need to move forward.

There are multiple potential ways of doing this, and several of these are being considered right now. Whatever happens, I want my patients to be able to interact with their information, to message me, to book or change appointments, to view their results, to access health advice and educational information. I want my patients' radiology and labs to be integrated with their inpatient, outpatient and GP information (and community information too). I want to be able to conduct my clinics and generate letters etc without the need for any paper. Similarly for ordering investigations or prescribing medications. Such systems exist, and I'm pretty sure I can envisage this operating in a Northern Ireland context.

But how do we sell this to the population? How do we get buy-in from society at large? How do we ensure that it is our people - our greatest resource - who join us in this journey of specification, resourcing, procurement, implementation and ongoing use? How do we give ownership to NI? This was a question asked at a recent workshop I attended. Various abbreviations have been tossed around: EHR, EHCR, EPR - all the usual.

Then came one classic NI suggestion from the floor that everyone chuckled at: "It's Our Wee Record, So It Is." And everyone immediately passed it over to think on other contenders (I suggested "NICRS - Northern Ireland Care Record System" - to be pronounced "knickers" of course), before parking the whole exercise, because in reality we had more important matters to discuss.

But as I think about it, I keep coming back to "Our Wee Record". In my mind, this perfectly sums up what we want. It has to belong to us - the people of Northern Ireland, clinicians, patients, administrators. It's our wee record - it's a familiar thing, something we love, like our wee phone number, our wee debit card, our wee driver's licence, our wee first child, our wee signature, our wee PIN. (If you're not from NI, this will leave you utterly bemused - it's a Norn Iron thing). And since it's OURS, we do it our way. We're not Brazil, we're Northern Ireland. This, dear planet, is how we roll. And when we say we're going to implement an electronic care record, we acknowledge the excellent steps made in nomenclature across our beautiful blue marble, but, thran hallions that we are, we're going to make our call. If we do this right (and make no mistake - it is my forthright intention to make sure we DO do it right), we can be an example for other regions, and export our learning. Because for a population of 1.8 million, that's what we've been doing for years in the fields of science, engineering, agriculture, literature, art etc.

The success of this project will hinge as much on the vision and buy-in as on the technical solution and its financial resourcing.

It's Our Wee Record, so it is.


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  2. I'm not a Northern Ireland and I barely understood something, lol
    But you are right, I personally had my clinical records lost within the same hospital, not to mention when I changed several because of my new job on PapersHelm reviews. That's a sweet and very touching post. I hope it will deliver its message to those who are responsible for the wee little things you love:)

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