AKA – MyData and Coronavirus, Take 2…
I first wrote on the subject of Mydata and Coronavirus back on 8th March; just over two months, but feels like a lifetime ago…
On the plus side, much of what I was talking about way back then has moved forward a lot; that was unexpected as I was writing more about prep for the next pandemic – assuming it was too late to do much for this one. I’ve been busier than ever working via hackathons and MyData Global to put a prototype ‘Covid 19 Data Commons in place’. We’ve now taken the prototype as far as is reasonable and need to see if we can get the funded to move to a real deployment. Here’s a write up of what we built in the prototype – using mainly JLINC protocol, Salesforce CRM and Einstein Analytics.
On the less good side, I’ve been so down in the drains of the data available (or more accurately, not available) that I’m truly horrified at the lack of preparedness for a pandemic event in our global and local health information systems. Fragmentation of data, principally into country level really limits the analytics; but worse than that I think is there is no Covid 19 data-set for the 99.95% of the global population not as yet hospitalised or a fatality.
What that means in practice is that whilst Covid 19 is clearly a global citizen management challenge with medical, economic and societal impacts, we are largely flying blind and firing blanks. That’s what I mean by the title of this post; we have stumbled into this battle with the Coronavirus armed with the digital equivalent of peashooters. And then picked up or made some sticks, in the form of a whole range of apps that whilst well-meaning, won’t touch the sides of the issue at hand.
That means: not enough or inaccessible data, limited insights from analytics – most of which are not actionable; very limited use of ML/ AI, the bluntest of segmentations (dead, hospitalised, key workers + ‘the rest’), and no effective means of communicating directly with the huge majority who are in need of significant information.
I won’t dwell on a long winded statement of what needs to change; it’s quite simple really. Every human on the planet should have the readily accessible ability to create and manage their own personal health record, or have it done on their behalf by a trusted provider (e.g. something akin to UK Biobank). Two fields plus a decentralised identifier would be enough (Covid 19 Medical Status and Keyworker Status Y/N) to get started. The design of that should be run by some entity with the right skill-sets and reach (WHO or similar), and overseen by another such as MyData Global. That need not be rich or deep data; just the basics for pandemic tracking and avoidance and the ability to flex quickly when needs be. That is not to replace the other health records that are around an individual; it’s to augment and help with integration. Clearly one would not expect 100% uptake or anything like it; until the next pandemic drives further adoption. But it would not take much to do better than we are at present. That’s what we are trying to build with the MyData Commons work; fingers crossed that finds a way forward.