30 September 2018

Nazberry Pi - Here we go again!

In March 2019 we are heading back to Nazareth, this time to raise funds for the Maternity Unit in Nazareth EMMS Hospital. Please consider supporting us, or even come along for the ride! It's going to be a great one this year - the Three Seas Challenge - Med, Dead and Galilee. And then topped off by the arrival in Nazareth itself, an experience not to be forgotten. Your help is very much appreciated by the mothers and babies of this amazing little Palestinian-Israeli city.
Looking after the new arrivals in Nazareth

Please donate: https://nazarethchallenge19.everydayhero.com/uk/nazberrypi - THANKS!

17 June 2018

The Wrong Kind of Accountability

"Accountability" is one of those words that gets tossed about a lot, and it’s considered to be an essential part of the values of a high-performing organisation. However, I sometimes feel that we get it badly wrong, and instead of being a force for good, it is a force for bad, and one of the reasons why some of our best intended projects end up as a highly successful resurfacing and dualisation project for the Highway to Hell.

AC/Countability Live

We set up our projects with Senior Responsible Owners, Project Managers, Project Teams, and clear objectives (we think), yet somehow everything feels as if we’re set up to fail. How can this be when we have clear governance structures - Jimmy reports to Jenny who reports to the Project Board which reports to the Strategic Board which reports to Jethro the SRO and all should be tickety-boo?

A clue might be in how we think about Accountability. I’ve heard it expressed in terms of “I want to have one neck to choke” or “the buck stops here”. In our language around Accountability we seem to be anticipating that everything will go tits-up, and we want to be able to apportion blame ahead of time. You hear terms like “heads must roll” and “somebody senior has to get the sack”, especially from the media, and the notion is that if only we had better people in place, the project would have succeeded.

In practice, what happens when projects fail, it’s some underling supposedly reporting to someone further up the chain who gets tagged with the blame, and the whole thing is fixed when they’re fired, because project failure represents a moral failing on the part of the poor sap left holding the can. (That’s not to say that “failure” is always a bad thing - here's a take by Eoin McFadden on the RIGHT Kind of Failure - a very necessary thing, and positive if we're prepared to learn).

Anyway, the wise-after-the-fact cynics (and Northern Ireland is full of these arseholes, but we’re probably not unique) almost seem to want projects to fail. They have no solutions themselves, and the proposals that they do tend to offer are nearly always completely stupid. Not always always, but that’s yet another story for yet another day.

A large part of the problem, I will argue is the Wrong Kind of Accountability (WKA), which exists in the entire governance model, where Project Failure is almost anticipated, and Project Success is almost seen as a million-to-one shot, but it might just work.

Can do we change WKA into Real Accountability (RA)? How do we anticipate Project Success, and make that everyone’s expectation? How, in the event of failure or delay of certain aspects of the Project do we swiftly analyse the problems and take remedial action in order to get things back on track? How, if the Project itself turns out to be a mess (and this does happen from time to time), do we take the learning from that experience and use it to “fail better” next time around?

Well, I’ll tell you one way we’re not going to learn or analyse, and that’s by finding convenient places for bucks to stop or throats to choke. The Wrong Kind of Accountability model is toxic, and leads our organisations and projects ever-further along the Highway to the Wrong Kind of Hell.

Bugs in the structure

So where’s the bug in this wonderful governance structure? Surely everything should work if we have a nice clean and clear Reports-To hierarchical structure? You know those charts that you see? This one’s from MNB Architects (and I’m sure it was a success), and is fairly typical, and there’s nothing intrinsically wrong with it:
Project organisation structure - example from MNB Architects

All looks pretty ship-shape and standard, and similar models are widely used in the Health Service. But you see those lines that connect the various boxes? They’re “Reports-To” lines, and while there are no arrows on them, there is an implied hierarchical directionality to them the builds in this top-down Wrong Kind of Accountability. The Kitchen Consultant is Accountable to the Project Consultants - that’s the clear directionality - it’s one-way, one start/end point, one lane, and one neck to choke. The point of failure is implicitly located at the nodes (the boxes) and not the lines between them.

Another problem with this structure is that the top is isolated from the bottom - and this is where the real problems hit the Health Service. The only way the upper reaches of the chart get to know about what’s going on “below” is through periodic review meetings. These go under a variety of names - Strategic Board Meetings, Project Board, Assurance and Compliance Review - all that rubbish. So the people who are “ultimately accountable” typically get high-level and sanitised updates of how things are going from those lower in the chain. The periodic nature of such meetings means that those doing the reporting typically cram stuff in the night before (which is often when they get the minutes from the previous meeting, which may have been three months ago), and try to cook up excuses for why their particular workstream is falling behind schedule or not delivering. They also tend to identify where to place the blame - sorry, Accountability - for areas where things have gone wrong.

Part of the reason why this happens is that those higher in the pecking order aren’t looking to understand what’s actually going on - they are looking for that most vacuous token in the whole damned system - Assurance.

And with Assurance, we have hit the nub of the problem - the real villain in the WKA saga. Assurance tells you everything is OK and gives the false impression that you’re on top of things when in fact you haven’t got the slightest clue what is really going on. Assurance increases in potency as we climb the hierarchy - Assurance built on Assurance built on Assurance like a lovely house of cards.

Politicians love Assurance. Senior executives and consultants love Assurance. Often doctors, patients, the media, the public love Assurance. Blessed F*cking Assurance. Everything is OK, AND you have a neck to choke waaaaay down the line when you realise that things haven’t gone to plan.
But this attitude does not lead to Project Success. It builds in a failure mentality, which I see as one of the key reasons why good projects fail or go over budget. Much as I would love to hang the failure of the Northern Ireland Renewable Heat Incentive Project at the “Accountable” (ha!) feet of the former First Minister or the senior civil servants involved, and much as we can identify specific failings, the reason that particular corpse kept stumbling along was that everyone was wallowing in Assurance that things would be fine, and they all had a neck to choke if there was to be a problem.

Maybe we need to be more charitable and realise that complex projects built on Assurance and directed acyclic governance graphs are inherently vulnerable to this sort of malfunction.
Assurance behaves as a firewall, preventing those higher in the governance structure seeing what happens at lower levels. It turns everything below them into a “black box”, where they don’t know the workings, but they assume that for specific defined inputs, they get specific defined outputs.

So to quickly recap, here is the problem:
Project governance structures based on Assurance/Reports-To models instantiate the Wrong Kind of Accountability and contain specific vulnerabilities that leave them open to failure, with everyone looking round for the One Neck to Choke.

Embedding Real Accountability

Having identified Assurance as the corrosive element in our structures, how do we get past this? How do we fix the failure-prone command-from-the-top, assurance-from-below model to give our projects (assuming they are well-conceived - again, that’s another story) the very best chance of success, and make Accountability a mechanism for that success, and distributing praise and reward where it is due?

I’m going to suggest that we need to up our game. Each node (box) in the governance diagram needs to be able to reach beyond the node below to have some idea what is happening at the next level, beyond the firewall, so when people have their project meetings, they’re not just getting Assurance, they are understanding what is going on. They can’t do this through the people who report to them - they need to be involved directly, at least to some degree, with that next level.
In the case of the Senior Responsible Owner of a project - the person at the very top of the structure - she/he needs to be engaged and visible on the ground to those who are actually working at the coal face. This involves a lot of work and commitment. And that person - that SRO - has to embrace and accept that Real Accountability. The same is required for Project Sponsors and other senior people involved.

If you think about it, this is the hallmark of successful projects, as well as those unsuccessful, but well-meaning projects where useful learning has been acquired. Leaders are found at every level of the hierarchy - they are engaged, they want the project to work, and they are prepared to roll up their sleeves and understand things at each level of the hierarchy.
They don’t regard the Project as a series of waterfalls that coincide with project meetings - they see it as a journey where each step is important, rather than jumps between major milestones. They’ll help individual people achieve their goals. They’re not “too big to fail”.

Getting stuff done

Perhaps the best example is the Apollo Program of the 1960s and 70s. This was a ridiculously ambitious undertaking in may ways - mind-bogglingly complicated, involving the rapid (and admittedly very well funded) development of new technologies and approaches. But one of the keys to success was that the people at each level of the programme had an understanding of what was happening at the next level up and the next level(s) down, as well as the ultimate over-arching goal of the entire project.

The NASA cleaner probably never said “I’m putting a man on the Moon” to President Johnson when asked “And what do you do here?”, but you can be sure that he/she was very aware that this was what the whole thing was about. Armstrong, Aldrin and Collins knew in high detail about the minutiae of orbital mechanics and the engineering of their spacecraft - they didn’t just accept the Assurance of their engineers. As the Apollo 1 disaster underlined, their lives were on the line. It wasn’t good enough for them to have one neck to choke.

And the same applies to our health service. We can’t operate in anticipation of failure, or an Assurance model based on the Wrong Kind of Accountability. We need to map Real Accountability onto coal-face engagement, relentless pursuit and criticism of our data, desire to succeed, spreading the word, multi-level leadership, constant, iterative progress, speaking the truth to power (the Right Kind of Assurance), and getting stuff done.

The President needs to, from time to time, be prepared to mop the floors.

Let’s build anticipated success into our models, and deliver Real Accountability.

[Your comments are most welcome - maybe I've got this completely wrong!]

21 March 2018

Taking a Raspberry Pi on a bike to the Dead Sea...

They said it couldn't be done. But what do they know?
Between 11 and 17 March 2018 I taped a Raspberry Pi onto a bike and brought it to Petra, the Dead Sea, Mount Nebo, and Nazareth.

A little insulation tape goes a long way to stabilise your Raspberry Pi and battery pack on your trusty bike.

A triumphant pose overlooking the Dead Sea - the lowest point on Earth.

And here is what the readout looks like. Low pressure up on the plateau, high pressure down at the Dead Sea itself. As well as a flat bit where we had a picnic. Sadly the humidity data is a bit harder to interpret.

This is what part of it looks like on Strava - unfortunately I missed out the last part of the descent after the picnic, but you get the general idea. Let me know if you would like the raw data to play with - some potentially useful environmental information in there...

17 March 2018

Biking through the souq

We arrived in Nazareth yesterday. And took our bikes through the Souq. One of the more interesting rides I've been on...

05 March 2018

Rare Disease: Getting Stuff Done

Or FIDO - "Feck It - Drive ON!" as the inimitable Christine Collins MBE puts it. In our health system (well, both systems, North and South) we are plagued with the nagging sensation that we need to ask for permission before doing things the obviously need done. This malaise is born of bureaucracy, self-importance (we're all guilty), lack of resources, genuine desire not to balls stuff up and all sorts or really good reasons to not actually get things to happen. We're all human, but we're facing a superhuman challenge.

But does the superhuman challenge require superhuman effort, or the guts and determination to say: "Feck it - drive on"? #FIDO is a catchy hashtag, but is it doable? Of course the answer is YES, and the action is in the second part of FIDO. The attitude is in the first part. We need to stop asking permission like shrinking violets, or supplicants begging the mighty priesthood of healthdom for meagre blessings. Feck it - drive on.

Here's the paradox - having a Rare Disease is a common problem. The reason why it's common is that there are over 8000 known rare diseases, and several thousand more that haven't been classified. And many of those 8000 are probably several distinct conditions lumped together. If we are going to develop rational treatment and management strategies we need two things:

  1. DIAGNOSIS - since 80% of rare diseases are genetic, this means molecular diagnostic capacity that can deliver at scale everything from single gene testing to whole genome sequencing (and beyond).
  2. KNOWLEDGE - this includes knowledge of the disease biology (not just the gene test result), and how it actually affects patients. What do patients with this disease want? What matters?
So on 5 March 2018 in the lovely surroundings of Riddel Hall at Queen's University Belfast, the Joint North-South Rare Diseases Meeting brought together patients and professionals, industry and academia, politicians and the public - all under one roof to discuss how we can bring things forward for rare diseases. Because if we can do it for these, we can do it for health all across this island (regardless of Brexit and all that nonsense). I felt the meeting was a great success, and many things were discussed, from specialist clinics for 22q11 Deletion Syndrome to Expert Patient training fellowships to help give patients a stronger voice in designing research and management.

Two themes in particular stood out for me (linked to the points above): we need to ensure our patients have access to the most appropriate diagnostic facilities, and once a diagnosis is established, we need information to flow through the system to put patients and professionals on the same page, and move rapidly to better outcomes. This is part of the transformation we need to see in health services - and the information should be owned by patients.

80% of Rare Diseases are genetic, and even given the current limitations of our knowledge, maybe half of these can be diagnosed by genomic analysis. But genomic analysis on its own can't do the full job. We can only make sense of genomic information in the light of both biological knowledge and phenotype. And in order for phenotype to be useful, we have to capture that raw basic physical medical information in a form that can be analysed alongside the genome.

Add to this the need for patients with rare diseases to be identifiable within the health system so that they get the help they need - effectively a rare disease registry - and you end up with (in my opinion) a fairly unavoidable conclusion: we need an Open Platform for Rare Diseases.

An OPRD needs to fulfil a number of functions:
  1. It should act as a list (register) of patients with rare diseases
  2. It should be a basis for research into those diseases
  3. It should allow clinicians to monitor certain specific outcomes 
  4. It should record healthcare episodes and information
  5. It should produce reports for national audits and commissioning purposes
  6. It should be interoperable with other electronic systems
  7. It should be able to be queried with appropriate governance by outside systems
... and there are many more.

My own view is that we should not reinvent the wheel here. The functionality of the OPRD should drive the design, which fits very closely with the specification of an Open Platform set out by Apperta UK. We are currently designing the first stage of such an Open Platform with the help of colleagues in London and Birmingham; the objective will be to pull data from Trust systems (with consent) to inform the genomic analysis databases in the 100,000 Genomes Project. With the experience gained in this project, we hope to start rolling this out to other areas.

Using the Open Platform (which will eventually tie in to #EncompassNI, whatever architecture we adopt for that) we will be able to ensure that the data belonging to patients with Rare Diseases  can deliver benefit back to them, their families and the wider health system. This will require careful governance and design, but we are up for those challenges too.

19 February 2018

Partners in crime

Good news! My esteemed colleagues Dr Michael Trimble (on the left) and Dr David McCance (on the right) are coming along on the Nazareth bike ride along the Jordan Valley. Michael did his medical elective in the Nazareth Hospital too - in fact he met his wife there (I don't think she told him she was going...) [I think you've picked him up wrong. -Ed.]

David did his elective in the Tel HaShomer Hospital near Tel Aviv. So this is going to be something of a homecoming for all of us. Wish us luck - and, even better, support the Stroke Unit appeal!

10 January 2018

Why Nazareth?

I get asked this a lot: "Why are you interested in Nazareth?" I also get asked: "Israel is a modern country; can't they look after their own hospitals?"

Well, Nazareth is an important part of the story that made me who I am, and since nobody else is going to be me, and I'm not going to be anybody else either, that's why I'm going to tell you about Nazareth, and fight its corner.

Having said all that, I would just like to gently point out that Nazareth can be part of YOUR story too, as you can be part of Nazareth's. A history stretching back over 2000 years is still being written, and although my part has been very small, it's still something that means a lot to me.

Nazareth is now a fairly large town in northern Israel, and of course its most famous former resident was Jesus, which for many people is a big deal. It was for me too at one point, although I have a very different view of All That Stuff nowadays, and Nazareth played a large part in my current worldview. The people of the town and the surrounding region in the Lower Galilee are mainly Arab (Palestinian Israeli). Their ancestors have worked this land for millennia, genes flowing through bodies that have been Canaanites, Israelites, Assyrians, Jews, Greeks, Christians, Muslims, Druze and even quite a few of other and no religions. Whatever way you look at it, the Palestinian Israeli people of Nazareth are the closest living relatives of Jesus and his family.

The Nazareth EMMS Hospital was founded by Dr PK Vartan in 1861, originally as a dispensing clinic. Vartan was the son of a poor Armenian tailor in Ottoman Constantinople, who ended up studying Medicine in Edinburgh and being sent by the Edinburgh Medical Missionary Society to deliver healthcare in Palestine. The "English Hospital" (how ironic!) is now the largest employer in Nazareth itself, and although run by a Christian Trust (The Nazareth Trust), employs and treats Muslims, Christians, Jews and others without discrimination. It also provides outreach clinics in the West Bank and (on occasion) Gaza, and is the designated trauma centre for the Lower Galilee region.

Being a predominantly Arab hospital, and given the way the Israeli health system works, it suffers from not having the large donor base of many of the large Israeli hospitals in the big cities. This is why the link with the UK is so important. We are trying to buy a CT scanner for the new Stroke Unit which will cater to a population of 250,000 people who really need it. This will make a big difference to the lives of people in the Lower Galilee.

But Nazareth also affects us here, and personally I feel I need to give something back. As a medical student in 1993 I learnt a lot from the doctors, nurses, hospital staff and patients in Nazareth. They welcomed me into their homes. They allowed me to share their lives as much as their (amazing) food. When I go to Nazareth, I don't feel like a foreigner - I feel like I am coming to a second home.

So that is why I am joining the Nazareth Challenge - cycling from Petra to Nazareth in March 2018. We aren't just getting a scanner - we are building and maintaining connections between a little part of the Middle East and the UK, and perhaps contributing towards peace and reconciliation in an area that needs it. Yes, there is a lot going on elsewhere in the world, and that is important too. We have to start somewhere. Can anything good come out of Nazareth? Yes it can. And what is good can come back.

Here's to a magical, beautiful, friendly city and its wonderful people. See you soon, insh'allah.

Please donate to the CT Scanner Appeal (yes, I am paying for my participation in the bike ride, so all your money goes to the appeal): http://justgiving.com/shanenaz - and spread the word. Maybe even join us (get in touch).