We've done it again! This time we biked from Petra in Jordan up to Nazareth in Israel, to raise money for the Nazareth Hospital CT Scanner appeal. Nazareth is the largest Arab town in Israel, but they still don't have a dedicated Stroke Unit to cope with this devastating condition and major cause of death. Click here to find out more, and please help this fantastic cause. Thanks!

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).


30 October 2017

Is all this really NECESSARY?

Randal Rauser @randalrauser is a Christian apologist, and I have to say I think he is a clever guy. He also seems to be a genuinely nice guy. And he has a reasonable following for a philosophical apologist, so I was delighted to receive a response (arising from a Twitter exchange) on his blog, purporting to land a reductio ad absurdum on me for my challenge to him.

Read it, then read it again. I admit I have some problems with Randal's reductio (I don't think it works), but it got me thinking, and I think we're at least closer to a point of understanding, which has to be a good thing.

Randal puts forward a view of a "theistic belief set" (TBS) that needs to be countered:

  1. God exists
  2. God's existence is necessary

Now here is where I thought I saw a problem - in order to argue with these points, Randal seems to be suggesting that anyone (atheist or other-theist) who counters either one of these is somehow missing his TBS - Randal's TBS is constructed to be immune from criticism (bear with me here - this is me trying to puzzle this stuff out).

So if I as a philosophical greenhorn say that Randal doesn't in fact know that his God exists, he can point to section 2, and say that God's existence is necessary. If I say that God's existence isn't necessary, he can simply contend that I don't understand philosophy and make some strange remarks about my mountain bike.

This seems very odd - how can intelligent people end up so divided? Well, I'm not a philosopher, and I use "necessary" in an everyday sense - it's certainly possible that I'm missing a technical/jargon usage, and maybe Randal isn't saying what I think he's saying. Let's look at that - perhaps by laying out my naive understanding of the terminology, it may help clear my befuddled head. Fortunately Randal has done a lot of the work for us here.

We'll start with a BRUTE FACT. To me (and no doubt Randal or someone will correct me if I'm wrong), this means something that can be stated as "it just is" and nobody in their right mind would contradict it. The world exists. Brute fact. There we go. It's just there, no argument. Fine. I'm happy with this (I understand hard-core philosophers can have hours of fun on this point, but we'll leave them to it for now).

Then there are CONTINGENT facts. This seems to entail a form of existence that depends on other things existing first. This blog post exists, contingent on me having written it, and the internet existing on which to host it. It's a brute fact (because here it is!), but is contingent on the existence of other things. So contingent and brute are not exclusive categories.

Now here is my new understanding (and, yes, maybe I'm still getting this wrong): NECESSARY existence may be a form of existence that is REQUIRED or INEVITABLE in order to explain the existence of CONTINGENT things. In other words, NECESSARY existence stands in a prior relationship to things that exist contingently upon it.

This does make Randal's appeal to the necessary existence of integers (in the twitter thread) seem rather odd. I would say he's right in that we can't avoid the existence of integers, but it's not that they exist "necessarily" in the way we have just explored above. They seem to have a different form of existence in whatever way Platonic things can be said to exist. My head now hurts, so let's pretend for the moment that this is not relevant.

The astute reader will have noticed that my structure above means that the Internet's existence is NECESSARY if we've assumed my blog post is a brute fact. So here is a problem for me - I don't understand how Randal can simply assert in his TBS that God's existence is NECESSARY without telling me what it is NECESSARY in relation to. And suppose he states that it's necessary in relation to the Universe, well, now I can accept the relationship in Randal's supposed TBS, while not accepting that it describes an actual state of affairs.

There are ways of getting universes without Gods, so while he may very well believe that God's existence is "necessary" (in relation to this universe), this doesn't pose even a slight challenge to me or Sean Carroll or anyone for that matter. All it tells me is what is going on in Randal's head, and while Randal's head is maybe not the worst example of the genre, this doesn't exactly bring a lot to the party in helping me address the question of whether God actually exists or not.

So let's get back to my mountain bike. Randal thinks that he has served me with a reductio ad absurdum, but I don't think this works. Yes, I can assert my mountain bike exists, AND I can accept that its existence is CONTINGENT on a number of things. Those things are NECESSARY for its existence, which is also a BRUTE FACT, and if it wasn't such a long ride from Ireland to Canada, I could pitch up at Rauser Cathedral and nail it to the door.

But I can't nail God to the door of Randal's cathedral. God is not a BRUTE FACT - God needs arguments to support his existence, and Randal's simple assertion of NECESSARY existence doesn't get us there. It looks like "defining God into existence". But, if we follow the logic above, Randal is actually making a much much weaker claim.

What then Randal's "theism simpliciter" in this sense? It's just a belief - a belief that God stands in a NECESSARY relationship to a CONTINGENT universe that we all accept exists as a BRUTE FACT. Maybe this has helped clear the air - Randal is not saying that God must exist - just stating his belief as to the nature of God's existence in relation to the here-and-now. Note that NECESSARY doesn't even have to be ABSOLUTE - after all, the NECESSARY internet is itself a CONTINGENT thing. Maybe the NECESSARY God is CONTINGENT on an even deeper metaphysical reality...

Maybe we've been arguing over words. Maybe I've been guilty of assuming that Randal is making a much bigger claim than the relatively modest one that he really makes. The bottom line is that even if God's existence stands in a NECESSARY relationship to the CONTINGENT existence of our universe in the Theistic belief structure, this doesn't mean that God is "necessary" (colloquially) to explain the universe - God still might not exist at all, *even if* theists believe that he is NECESSARY.

So, of course, I can therefore accept the above theistic belief statement represents Randal's position, and still maintain that a/ that relationship has not been demonstrated, and b/ I still don't think God actually exists in reality.

So now what?

[Written with a couple of wines on board, 30/10/2017. Edited slightly; 31/10/2017]

06 October 2017

UPDATE: The #NazarethChallenge - are you up for it?

Get sponsored to take part in the #NazarethChallenge and your fundraising efforts will go directly towards the creation of Nazareth’s first Stroke Department, for which we will need to purchase a new CT-scanner costing $600,000.

The Nazareth Challenge: 11th-17th March 2018 

Experience the Holy Land through two amazing events: walk the Jesus Trail or Cycle the Jordan Valley. Discover the land of the Bible in a totally unique way during its most beautiful season when Israel’s desert landscape is in full bloom.

A stroke is a life-changing event which can affect anybody. Every two seconds someone in the world has a stroke and it is the third most common cause of death in Israel. Treatment response times play a huge part in patient recovery and survival. Swift intervention reduces the chance of paralysis or even death after a stroke.

The people of Nazareth currently have no access to a dedicated Stroke Department in their own town. You can help us change that by joining the Nazareth Challenge so we can give the life-saving care the people of Nazareth deserve.

To find out more email laurie@nazarethtrust.org or call (+44) 0131 225 9957.