Friday, 10 February 2023

Joined up thunk

After three years of dental isolation, we booked back-to-back checks-up with Old Bill of the peach-coloured dental couch. We've been together now for 25 years and he looked after our girls from baby-teeth to leaving home. Now t'bugger is going to retire! Which is fair enough because he's of pensionable age, but it does cast us loose a bit. The Beloved asked if he'd contact all his clients to let them know but he looked pityingly at her and said "there are 20,000 names on my books, that's a lot of postage stamps". Anyway, I made a note-to-self to call in before the lease is up on his premises and come away with my dental records. Not my dental file - I'm not from the cannibal isles.

We're well into the 21stC but still, in Ireland, medical records may still be kept on 3 x 5 index cards in dusty cabinets as if they were the personal chattels of the medico who scratched them in their pharmacist-baffling crabbed hand. When we were home-educating in the 00s it transpired that home-ed registration [TUSLA & Dept Education] records were not cross-referenced against children's allowance [Dept Social Welfare] records. School-kids were still entitled to children's allowance over the age of 16 if in full time education; home eddies maybe not so much.

At the end of last month Health Research Charities Ireland, an NGO / umbrella-body / quango, issued their 2023 HRCI Position Paper calling on the government and its healthcare apparatus to embrace joined up thinking w.r.t. medical records. The Exec Summ:

  1. Progress the implementation of a national electronic health record 
  2. Build on momentum to support genetics and genomics research  
  3. Establish research support functions within the health service

When I was working in St Vincent's University Hospital 20 years ago they were talking large about how modern technology could present all a patient's data to those attending at the bedside. That would include allergies, biopsies, cardiology reports, drug-reactions . . . X-rays, yellow fever vax records, and zoonoses. For an elderly patient with medical history the physical records might be several kilos in weight scattered in a dozen different locations in SVUH and other hospitals, at their GP's surgery and maybe even in Germany or Australia because the Irish will go all diaspora. With tech otoh that crucial chest X-ray from last year would be on a screen at the nurse's station at the flick of a switch. But it was all talk and wistful aspiration. And here's HRCI calling for those same resources twenty years later. Jo Publick also wants Electronic Health Record EHRs. It's frustrating!

And who should be the CEO of HRCI be but Avril Kennan, who did me a huge favour many years ago by introducing me to her parents. Dr Kennan of HRCI is doing an important job making sure that those, who have drawn a challenging hand in life's genetic game of rummy, get the care and attention that we all deserve. HRCI claims to represent 1 million people [whoa that's 20%!] in Ireland because HRCI umbrellas 43 (!) separate charities from Adelaide Health Foundation to St. Vincent’s Anaesthesia Foundation. Cancer Research Ireland isn't in there because CRI is big enough to fight its own corner. Considering that 64,000 diagnosed with Alzheimer's and add all the impacted friends-and-relations, for that one condition; then 1 million people becomes credible. Kudos to Dr Kennan and HRCI's Advocacy Team for drafting this infrastructural policy document. 

According to this paper, the EHR should be designed to facilitate access of people's health data for medical research as if that was an unalloyed good. EHRs are A Good Thing for you or your aged parent: partial [in both senses] data in the hands of the the attending physicians may lead to faulty diagnosis, inappropriate treatment and poor outcomes for the patient. Ireland has a history of medical cock-ups and cover-ups which have generated understandable skepticism about scientific certainties uttered by the Minister of Health or the Chief Scientific Officer, let alone HRCI. Let's hope that the woo-folk in the Dáil won't diss EHRs out of fear about "genomic science" and cyber-breaches involving personal medical data.

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