#shanenaz

We're doing it again! This time we are biking from Petra in Jordan up to Nazareth in Israel, to raise money for the Nazareth Hospital CT Scanner appeal. Last year we raised over £50,000 for the Children's Unit! Nazareth is the largest Arab town in Israel; the people are lovely, and the kids are awesome. Nazareth also treats kids in the West Bank of Palestine who have very limited access to healthcare. They need your help! Go to my sponsorship page to find out more and see what you can do! Maybe even join us..?
http://justgiving.com/shanenaz

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).

Thanks.