27 April 2019

Back to Nazareth

As a medical student I was fortunate to be able to spend a summer working in a rather remarkable little hospital in the north of Israel. Nazareth EMMS Hospital was founded in Ottoman Palestine by a young Scottish-trained Armenian doctor from Constantinople back in 1861. It has witnessed a great deal of turmoil and change in the region over its history. My student elective in 1993 made a deep impression on me, and I developed a strong affection for the place and especially the people. Nazareth is the largest Arab town in Israel; the majority of the population is Muslim, but there is a sizeable Christian minority with roots going right back to the time of Jesus. Although I’m not religious, every time I’m in Nazareth I feel a buzz about this town that intrigues and delights me (as well as a lot that needs to be fixed), and I have made many lifelong friends among the Nazarenes.

In March 2019 I joined a group of other riders on what was my fourth bike ride to raise money for the hospital. The Maternity Unit is in serious need of renovation, and twelve of us saddled up in Jaffa on the coast for the 300km ride through Israel and the West Bank to Nazareth. Over the five days of the ride we made over 5000 metres in total elevation – that’s half the height of Mt Everest – with a fair bit of downhill also. Jerusalem, our highest point, sits at about 800m above sea level, while Jericho, the lowest city on Earth, is about 200m below. Israel and Palestine can be hilly in places, but the scenery, especially in the Spring, is breathtaking, and biking is the perfect way to meet the locals and experience the surroundings.

Of course we didn’t take a direct route – on the first day we travelled from Tel Aviv-Jaffa to Neve Shalom, a lovely joint Arab-Jewish community focused on peace and reconciliation. The second day took us up a tough climb to the astonishing city of Jerusalem, and we had a brief chance at the end of an exhausting day to explore the Old City. From Jerusalem we biked through the traffic to Bethlehem, taking in the Church of the Nativity and getting our photos taken with a large group of Japanese pilgrims who seemed to think we were somewhat crazy. Perhaps they were right. The ride from Bethlehem to Jericho was largely down hill; we had to work for it – almost 800m of climb to descend 1000m – but the poppy-speckled Judean Desert had some spectacularly rocky and adrenaline-inducing tracks waiting for us, and we made the most of them.

Leaving Jericho the next morning, we headed up the hills around Nablus, and the freakish rain that had ended the last few years’ drought, raising the Sea of Galilee a full 3 metres, had turned those hills a Celtic green, and still had enough in reserve to give us a good soaking by the time we crossed the Green Line back into Israel. We were well ready for a rest by the time we reached our overnight stop at Nir David. Our fifth and final day started off sunny, but we hit a major snag when we became stuck solid in the red mud in the fields – it clogged our wheels and gears like quick-setting concrete. This forced us to back up and take the main road to Daburiyah at the foot of Mount Tabor, then off-road through the Churchill forest up to Nazareth itself.

The welcome at Nazareth was an incredible experience – bagpipes, singing and cheering as the cyclists, along with the walkers from the Jesus Trail hike, arrived through the gates of the Hospital. And this was what it was all for – all of us have our different stories as to how we fell in love with Nazareth, but we know that quite aside from the exhilarating experience of our ride to get to this place, there is something important going on here. This hospital is a crucial part of this Middle-Eastern community, caught in the cross-hairs of one of the world’s most perplexing political problems. There are relationships being formed here, healthcare being provided, and – of course – babies being delivered. Thanks to the help of all our supporters, those babies will have a better start in life, and the chance to grow and serve their community, to form relationships, and build the sort of future that everyone – Christian, Muslim, Jew, Druze or Other – deserves.

To those of you who donated to our appeal, thank you so much. We loved representing you on this ride, and I really hope you get the chance to visit Nazareth to see at first hand what your donations have achieved. Most of all, I hope you meet the people whom you’ve helped, and maybe you’ll fall in love with Nazareth too.

If you would still like to donate (please do!), click here: http://bit.ly/nazberrypi 

02 February 2019

Nazareth Trust - looking to the future

This is a great video about the Nazareth Trust, well worth watching to the very end.
Things have changed a *lot* since my first time there as a medical student in 1993, and although I don't believe in God, I do believe that this is a special place that's doing an incredible amount of good, and is a model for how we should be fixing our world. This is why I love going back on the bike, and why I'm so grateful for all of you who have supported us over the years, and continue to do so. Because it's *working*. Christian, Muslim, Jew, Druze, Atheist - it doesn't matter. So watch this video, chuck us some loot for the bike ride, and follow our journey on the Three Seas Challenge. And if you are ever fortunate enough to visit Israel-Palestine, make some extra time to explore this incredible little city.

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.