What my `near death` experience taught me about leading the NHS Pathology Standards work

This is not a post about the current Covid-19 situation. So please click away now, if that is what you thought.

As some of you might know, I lead the Pathology Standardisation work in England for about 2 years. From time to time, I share my learning and also updates on the standardisation work.

This is a post about a life changing event I experienced, where I could have nearly died on one of 3 nights and how that event changed what this work meant and why I believe the pathology standardisation work needs to be completed.

About 6 months ago, I went to India for work. I have been to that country many times over the years, because I have roots there. However, this time I caught Dengue Fever (aka break bone fever). For those of you who don't know what Dengue fever is, it is a viral fever that attacks and destroys your blood cells. It commonly attacks your platelets and in severe cases you can have uncontrolled bleeding from various parts of your body and sometimes inside your body/organs – when it is called Dengue Haemorrhagic Fever. Just like some other virus infections, it has no specific treatment – you simply support your body while it fights to clears the infection. The main thing to do is to keep an eye on your blood counts – as your platelets can sometimes fall to 10-20% of their normal values. That drop to 10-20% in platelets is when really bad stuff happens.

Long story short, after a very normal working day, I woke up next morning unconscious on the bathroom floor with very high fever and so was rushed to hospital. As I was receiving intravenous fluids in the hospital, my doctor told me I quite likely had Dengue Fever. After about 2 pints of IV fluids and having had my Dengue diagnosis confirmed, I was discharged with instructions to stay hydrated at home and to come back for repeat blood tests every other day. That is actually as much as I remember, because for the next few days all I remember was being woken up to eat, drink fluids, take medicines and going to hospital to give blood. I did have a guardian angel – my mum, who is the protagonist of this part of the story. I remember waking up at night delirious not sure how to get to the toilet and other times with a cold pack on me because my fever kept going past 104F and would not come down. There were times when I was unaware of anything – it was like my brain was fried and dead. Anyway, all credit goes to my mum for getting me through those days. As I started to get better, I started noticing that I was being made to drink this really bitter, horrible green juice/goo every day. It was just vile and some days it was multiple times and more than one glass!

So here is the thing – the horrible green juice/goo was ground papaya leaves – not the fruit, but the leaves! Don't ask, but some people believe the chemical `carpain` in papaya might help! It turns out that the hospital down the road I was taken to had an electronic lab results that were sent to the patient's registered phone by SMS/text and via email! Each time my mum would see the blood counts and platelets dropping, I was getting more glasses of the papaya leaves to drink! I am not promoting ground papaya leaves for a second – but let us focus on that vital thing. Having electronic lab/pathology results sent to doctors, patients or carers often result in `actions`. Someone I know calls it `Actionable Intelligence`!

“That is the really great thing about it – when you give information to the people it matters to, they can choose to act on it!"

So here I was, trying to get lab results to be shared (based on standards) across different settings in England and my mother in a `developing` country could access and act on my blood results! I've had others who traveled to `developing` countries talk about similar experiences! Yes, I know some lab results are available via the NHS App and I know exactly how they get there too and the terrible burden of legacy we deal with! Yes, I know you will say that your local GP receives lab results and maybe in your local hospital you can view results of patients. I know the pockets of excellence that exist, but I am talking across an entire country! Please don't tell me a batch based system is the solution. I am talking about patients and clinicians being able to access and/or receive test results from everywhere they choose – be it a phone or an EHR system!

“The pathology standards programme is the key to connecting all these disparate systems across the country – allowing so many people to access/receive lab/pathology test results."

So when I came back to the UK, I knew that I had to do whatever was in my power to make the pathology standards programme successful. The end result was obvious – to empower patients, carers and clinicians to be able to have `actionable intelligence`. I had a different drive, different view of what was needed and possible to do. I am sure those around me did not see what I was seeing, because they did not experience what I had. For about 2 months, I was not able to walk without excruciating pain for more than 2 minutes but I forced myself to travel to Leeds regularly. I had big dark patches on my body from the time I had bled into my skin due to my platelet counts dropping. I still have trouble recollecting things from before, because Dengue likely cooked my brain due to the high temperatures or possibly post-viral meningitis. I do not care as much. I still woke up early hours to work on this thing that matters to so many.

We created a body of work for standardising the test results (Unified Test List), standardising Units of Measure and for sharing results (FHIR). We needed to get this in front of people who could see the bigger picture, across the typically fragmented world of primary care, secondary care, etc. We created the Pathology Standards Governance Body – a representative group of experts from across different professional bodies, healthcare and patient groups! We started work on standardising Antimicrobial Resistance (AMR) and surveillance reports that matter to Public Health England. When we shared our Pathology standards work with other countries (SNOMED International member countries) and they were keen on adopting our work if we could make it available to them. While the international community discuss how to address some of these issues, the work we have done is ahead of many others. There is still lots left to be done! Let us be honest, this isn't the first time pathology `standardisation` was attempted in England. There was someone before me – `Rick Jones`, a man ahead of his time. I was only trying to get his vision realised. As someone recently remarked – this is the closest we have come to seeing pathology standards work realised. There are going to be different views, opinions and challenges but the end goal is `actionable intelligence` for the ones that it matters to the most!

Of course, there is now a great focus on `Covid-19` related activities. At the technology level, what Covid-19 like things need are the unifying interfaces (system interfaces & data interfaces) that allow us to access and act on information. `Data interfaces` that work consistently in defined ways are what `clinical data standards` are. Some would say Covid has exposed some of the cracks in the system, I'd rather say that Covid has shown us that there are more important things than what we've believed previously. My own experience of almost dying taught me that there are certain things that are very important in life – some that are worth doing. If we can get Pathology standards adopted across the system, we will be a million miles ahead in terms of preparing for something like Covid forcing us to evolve/adapt continuously, to be able to access and share information remotely to inform our decisions. So let us work together more than ever to address this need! The credit is not mine alone, there is an entire team of people working on the Pathology Standards work. They are the ones who deserve all the credit!

If you would like to find out how you can access the work, contribute to it or even have a rant at me, please leave me a message!

Please note this is also cross-posted on LinkedIn