Irish Medical Times article - Database, database on the wall, who is the sickest of them all?
I can only guess as to why the list didn’t already exist - poor IT infrastructure, death by details, handcuffed by GDPR, legal wranglings, lack of thought leadership, no budget, deprioritized, no time, and of course the five fingers of pain that can strangle ideas: Who, What, Where, When, Why.
As patients, we assume that somebody somewhere will do something to try and save us when death starts circling the drain (we’re the drain).
However, when Covid hit and the medically vulnerable we’re sliced away like a butcher trimming the fat off the steak of life, my sense of self preservation kicked in. I started asking everyone -by everyone I mean the internet- how would people with underlyings be identified. I found vague assurances from self appointed Twitter medical experts that seriously ill patients would be ‘known’. I heard one GP, who appeared to spend a notable portion of her time spinning herself around the media circus, brush off the question with a dismissive - “There is a spreadsheet”.
She wasn’t wrong, there was a spreadsheet, in fact there were about 2,500 spreadsheets. Some took the form of mental spreadsheets, or spiral notepads with little notes taken in hieroglyphics. As vaccine production began and the death toll increased, with the elderly and medically vulnerable making up the majority of the dead bodies, I started to ask real people for their thoughts on this - medical friends, people who worked in the HSE, my postman.
“There IS a list though, right?” I questioned, “There is a centralized database somewhere, surely? They have the ability to share live data, don’t they? They’ve got computers? They’ve heard of computers? Can they spell ‘computer’?”
Cue my rant which went something along the lines of - “Ireland needs to leverage its tech company base, use its skilled workforce, find a way around the handcuffs of GDPR, and set up a database to protect us all from future viruses.“
There were embarrassed looks (mostly from my postman), shrugging of shoulders, mumbling of NIAC looking at this and considering that. Even the vaccine prioritisation of the medically vulnerable by NIAC was, in places, mind boggling. Heart failure patients were excluded from the ‘very high risk’ cohort, despite the global evidence that heart patients of all ages were dying at a faster rate from Covid than any other underlying. To channel Joe Duffy listeners and speak on behalf of Ireland’s 7,000 heart failure patients under the age of 65 - it was a disgrace, a disgrace Joe!
I do appreciate NIAC had a very tough job, we muddled through and the vast majority of people have now been shot in the arm - Hallelujah! But if this pathogen panic happened all over again in the morning did all those spreadsheets, spiral notepads and somewhat questionable sickness criteria make it into a database of dead-people-walking? (that's just the database's working title, I’m open to other thoughts).
Eh, no.
Is it possible for a state run body to compile a list of this sort, yes it is, may I present Britain’s NHS. For the last ten years NHS Digital has been collecting data from GPs to facilitate bespoke data requests. I know every Irish person's paralysing fear is that ‘God forbid’ somebody should find out an ounce of information about them. As the joke went during the HSE hack; someone in Siberia now knows that Seamus in Cahersiveen has been waiting 5 years for a hip replacement (Seamus has since died from mortification).
The recent HSE ransomware attack opened the nation’s eyes to the fact that even with a small amount of personal data a criminal could socially engineer more information and ultimately get at your money, your secrets, your diagnosis. They could and would ruin lives.
At the time of the HSE cyber hack I heard an older person on the radio say "Forget Covid, we’re in the middle of a cyborg attack!". At this point, I think Earth would welcome cyborgs, something new for Joe Duffy listeners to get worked up about. The thing that worries people most is not the criminals getting the information, or even the cyborgs coming for tea, it's the relentless marketeers that will haunt us forever.
So, in a world where first party data is the new oil, how do the NHS manage to collate a list of the sickest of the sick without hanging out everyone's dirty laundry - simple, they pseudonymize and encrypt the data before it leaves the GP Practice. The original data is only allowed to be decrypted and shared under strict criteria e.g. public health purposes like, oh I don’t know, vaccination against a killer virus. If a patient does not want their data shared outside of their GPs office they would have to deliberately ‘opt out’. Did the NHS set up legions of committees and quangos and ask a million people for input before deciding, no, they were legally directed by the Health Secretary to collect the information from sources including GP records.
To be fair, Ireland’s health system is not the same as the UK, for example our GP services are mostly private whereas in the UK they are predominantly public. Linking a national network of GPs back to the mothership is much easier to pull off in Britain. We are also a smaller nation with a smaller budget.
But imagine a scenario where all the GPs and hospitals in Ireland sat down and created a list of all of their vulnerable patients (sound familiar). Based on this list they put an order into the HSE for vaccines, but imagine along with this tally they provided a list of vulnerables to be kept centrally, so when the next booster injection was needed an automatic text/letter was sent to person X. No overlap, no gaps, no return to one's mental palace to recall names. Imagine everytime a new person was diagnosed or died they came on/off this streamlined list. Imagine that!
We had an entire year and we are home to the headquarters of 12 of the top tech companies in the world, yet we couldn’t build a database?
I have heard Ireland described as the ‘Home to Big Data’, surely we had the data governance in place to ramp up the database whilst keeping patients' confidence and privacy. Bear in mind we’re also home to Big Joe where people air with the nation every unfiltered thought that enters their head. Some people won’t tell the government their middle initial yet they plaster their profile all over the internet. The dark web knew Seamus was going to have hip trouble, long before Seamus did.
Perhaps GDPR and lawful consent was a sticking point. My understanding is that GDPR is subject to proportionality, it has to be balanced against its function in society, tax data for example is not subject to GDPR. Paying taxes is important to maintaining society, so is staying alive.
Consent is undeniably important and silence is not consent. The infrastructure is there to reach out to a large number of people quickly to get a box ticked - nowadays, GPs and hospitals send you more texts than your BFF, and they ring to confirm you are coming like only your mother would. There will always be Privacy Warriors and they can be respected. The HSE wouldn't have gotten every medically vulnerable person into the database. But I think a large number of the medically at risk with a phone would have swiped right. A more comprehensive pull could have happened over time.
Evidently there are a multitude of nuances and hurdles that I am not privy to which prevented us from taking a giant step forward. But I can't help wondering if Ireland was hampered by the sheer magnitude of it all, was it just too much of a stretch?
I remember as a child watching an episode of BBC’s Tomorrow’s World, the presenter spoke of a future where people would routinely touch their screens to access data. My little face hung agog as the presenter suggested we reach out and touch the television. In a scene, not unlike ET, and much to my brothers' hilarity, I extended out my finger to touch the TV in a trance. Well, who’s laughing now, eh?!
What’s in our future? What can we touch? Sometimes, you’ve just got to reach out to find out.
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