I've had to cancel everything again. No walks with friends, no in-person purchases, no childcare.
I made a decision because I track the Covid cases in my area using two tools that are based on official data. Both are broadly "civic technology": they are taking datasets and making them legible to people, often filling a gap in the market where government has not done that (or has done it and then not kept it up as a product, allowing it to go mouldy).
https://twitter.com/dracos/status/1340344358139260929 & https://dracos.co.uk/wrote/local-lockdown-lookup/
The last few months have involved me waking up, checking twitter and checking the caseload for my area. I've had to try and work out what each change in abstract numbers in categories designed by epidemiologists and public health officials means for me. I'm classed as "clinically extremely vulnerable".
The death rates for people with my conditions are not good (early rates for diabetics had us in the 50/50 space and I have other conditions on top of that). I'm anxious about not dying, not dying with a new baby, not dying with a partner whose visa status relies on my heartbeat and not dying while Bruce needs so many walks to the park.
Good boy.
We've had to make these decisions as a household, and each time I've relied on open data sources to do it. But the thing I've found most interesting about this (and I'm explicitly not talking about how this made me feel because the answer is just white hot anger) is that I am sitting here doing the job that I though government did. I can't close a pub, but I can decide not to go. I can't close a school, but I can keep my kid away from school-age children. I am taking day-to-day decisions based on data dashboards, even when those decisions are frustrating, scary or inconvenient.
With all that said, there are just a few things that I want to say about the last year that have struck me as being fundamentally broken.
Open data, as a movement, relied heavily on buy-in from government that was contingent on delivering savings and value for money. It was meant to be a technocratic revolution from government's point of view, and for civil society, a way to understand the quantitative data of Whitehall which might, in turn, bring up more detail on the qualitative.
But almost none of the promised gains of efficiency have actually happened. Making more open financial data happen at the same as closing down bodies like the audit commission doesn't lead to the same outcomes.
And so in epidemiology data. All data is readable, able to be put into contexts that suit particular outlooks, it isn't neutral. Fine. But. The political decisions have lagged data and very little has been made of that by political journalists (there is the oft-cited problem that lobby journalists might bring a particular ontology of understanding all crises as crises of the cabinet rather than of government or state).
Open data sits clearly in the "I need" rather than "so that" part of a user story. I've been able to make personal decisions in a pandemic using this data, but we need to acknowledge that this creates a narrative of personal responsibility for your own safety in a global pandemic. The publication of data has political possibilities and is a product that needs thought and iteration like any other.
We also, as practitioners, need to be aware that this stuff is real - people are having to make risk assessments on incomplete data. It reminds me of my first job. I was writing articles for NCT's website and our CEO kept repeating the line that we only gave information, never advice. As a new parent, I have discovered just how little use "information" without context to assess or operationalise it is.
It is difficult to know which unofficial sources to trust with something so serious. I used a couple of unofficial vaccine queue calculators, estimating my month of jab by conditions and age. I wasn't sure if it was safe to put sensitive medical data about my conditions into the internet rather than passively viewing a map, but my curiosity got the better of me. I couldn't see an official source for the answer it gave me (presumably a best guess) or whether this app considered whether vaccine supplies would influence that date.
I am surprised that public facing comms around expectations management has not been a priority for the government or the NHS, especially as we know how much realistic expectations can affect people's behaviours and compliance.
I've been confused as to why charities like Diabetes UK weren't advocating for diabetics while this was happening. I saw lots of comms around following shielding/lockdown rules (which is all good and fair enough), but almost nothing about trying to push for better support and conditions for people who are shielding. Early letters in the pandemic advised me to isolate indefinitely from my family. This is not possible. NGOs representing groups asked to shield should have been acting for us, standing up for bad policy, pointing out that households shield, not individuals and pointing out the massive deficiencies in the way that policy was drawn up and implemented so it could be improved.