07 February 2016

We need to talk about Care.

So here we go. Tin helmet on, and underground bunker stocked for the next fortnight. Ladies and gentlemen, I am about to drop the c-bomb on you. CARE.

[it's an internet cat; copyright: whoever]
I suggest that the word "CARE" is one of those words in the English language that sits around looking cute and fluffy and meaning one thing, and then *BOOM* up it pops like Optimus Prime and transforms into some mega-killer bad-ass robot thing, and you're left wondering what the heck just happened there.

Before you go off thinking I'm uncaring, let's look at just a two meanings of this tricksy little word.

a/ CARE can mean to "nurture", to "provide services", to "look after", to "protect". That sort of thing. The "carer" is performing a function for the "caree". It's all very value neutral; in principle a robot could provide this sort of care.

b/ CARE can mean to "love" or to possess some sort of meaningful mental state towards the thing or person who is the object of such care. We recognise this and value it. If I care about you, it means that you are significant to me, in and of yourself.

Now it is entirely possible for both meanings of the word to coexist. When I care for my kids in the functional sense, I do it in significant part because I care for them in the love sense too. But, and this is a crucial thing, these are still two separate things. And in the world of marketing and public discourse, particularly around health, this quirk of language has allowed some very problematic confusions to arise.

We have companies advertising their a/CARE services as demonstrating their b/CARE characteristics. We drop the C word into professional language, such that nurses and doctors (for example) are seen as being "caring professionals". The implication is that your plumber somehow doesn't "care" (and this may or may not be the case), but that your doctor or nurse certainly does (and again this may or may not be the case).

It's probably not a direct function of this linguistic quirk, but I wonder if we're seeing in society an "outsourcing" of b/CARE to services that are designed to provide a/CARE. We as families have perhaps become so disconnected that we expect a/CARE organisations to do the b/CARING for us. We're quite happy to leave granny sitting for 6 months without a handle in her bathroom, waiting for some official organisation to come and install one, rather than getting out the cordless drill and installing it ourselves. And making granny a wee cup of tea and a biscuit and sitting down with her and telling that we actually b/CARE about her, and want to know what else we can do for her.

Maybe it's easier to rail against the Health & Social a/CARE Trust for being so un-b/CARING as to not provide a rail as part of an a/CARE package, which would at least show that they b/CARE, and that our stroppiness is sufficient for us to show that we b/CARE, rather than actually demonstrating our b/CARE by delivering some a/CARE ourselves, pro bono. [If you kept up with that, congratulations!]

So what is my point? It's this. If you b/CARE about someone, tell them. Show it. Do something for them. By all means if there are deficiencies in their a/CARE, highlight that, and try to get something done about it. But we should all consider what we, as members of society, can be doing to provide some a/CARE for those around us also. Yes, we a/CARE by paying our taxes, but we b/CARE by actually rolling our sleeves up and doing something for people. Making someone a cup of tea. Picking up that crisp packet that some twit has tossed out of their car window and putting it in a bin. Fixing a lightbulb for the elderly gentleman next door, and running the mower over his grass from time to time.

And maybe promoting the development of a society where every single minute piece of a/CARE doesn't have to be allocated to a government body, but where it can emerge as a normal natural function of a healthy society where we actually do b/CARE about each other. Maybe then we can afford a Health and Social a/CARE system that is fit for the future.

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.

05 February 2016

Biking the Galilee

Let's do that again!

Legs legs legs.
More details will come in due course, but I am going to be cycling in the Galilee in November 2016 to raise money for the Paediatric Ward at Nazareth Hospital. This shot is from my previous cycle ride in Jordan and Israel back in 2009. That now seems like such a long time ago, but (as I am massacring my 40s like George RR Martin) it only seems like yesterday.

This time the focus of the fund raising is very clear - the Paediatric Ward in the hospital needs some serious redevelopment. This hospital cares for much of Northern Israel, particularly the very large Christian and Muslim populations who live in and around Nazareth itself.

I spent a couple of months as a medical student working in Nazareth and travelling around Israel, and I really fell in love with this crazy, gritty, intense town. This is where you'll find the best food in Israel (sorry, Tel Aviv), the best music, the most interesting people. This is Arab Israel at its best, but also where we in the West can have the most positive effect.

The hospital founded in 1861 by Dr Pacradooni Kaloost Vartan has been delivering care to the Galilee region for over 150 years - the oldest extant hospital in Israel (and possibly the Middle East).

So if you want to support what we're doing, please come on over to my fund raising page: https://my.give.net/shanemckee - please also share the link, and keep coming back to see how we're getting on! (Yes, I will be dropping a bit of scandal as we go on).