Data Sets You Free: Self-Quarantine Diary, Day 3

Michael J. Casey is CoinDesk’s chief content officer. The views expressed here are his own.

Due to a prior medical condition that puts me at higher risk, I made a decision to ride out this coronavirus crisis in my bedroom, physically separated from my family and others. I started writing a daily diary to reflect on what all this means. The first post, laying out my (possibly flawed) reasoning, is here. The second, here. This is the third, addressing a positive change in circumstances. I welcome comments. We’re all figuring this out together.

Well, I am definitely no Nelson Mandela.

Apologies to anyone placing bets on my having to do this for the long haul, but my “solitary confinement” has ended. (Not this daily diary, though). 

I’m downgrading from extreme social distancing to the regular standard that I hope most of you continue to apply. I’ve hugged my kids and kissed my wife. 

Why the abrupt end to my social self-denial after just two days? Quite simply, I finally got the two pieces of information I needed: trusted medical opinions and test results. 

They both came back negative. No, two doctors told me, I do not necessarily have a predisposition toward an auto-immune shock just because I once had sarcoidosis. And no, the New Rochelle testing facility told me, no one in my family currently has COVID-19. In short, I have no reason to believe I am any more at risk than any other 52-year-old of dying from the coronavirus.

Getting comfortable with uncertainty

It’s important to remember that my doctors could not provide information on what might sound like an important counterfactual. 

That is, they could not conclude that my prior contraction of a lung-impairing disease does not put me at higher risk. They simply don’t have enough information, either from the rather murky generalized data on sarcoid (it’s a very poorly understood disease), or the very fresh, incomplete data around COVID-19. There may well be an unknown heightened risk relationship, but it’s just as possible that my sarcoid experience has made me less vulnerable; maybe it hardened my immune system. They just don’t know.

Some might find this conclusion unsatisfying. In a panicked world that’s absorbing horrifying stories of under-resourced hospitals, the “what if’s” keep going through your head. Indeed, it’s the not-knowingness that makes the whole coronavirus experience unsettling.

In the age of Google, Siri and Alexa, we’ve become used to immediate facts at our fingertips or ears. That’s just adding to how jarring the limited information on this frightening topic is for us. 

The reactions to this information void are doing great harm to our way of life and economy as it necessitates drastic actions like the one I originally decided to take. 

So, how about this? Just imagine if we knew where all the contagious people were (not their names and identities!). What if there were a threshold of comprehensive-enough testing and data gathering that, if crossed, would trigger appropriate adjustments to practices? Deploy resources here, apply a stricter containment policy there, figure out which of the less affected regions can be opened up and monitored to keep the economy going and to provide vital resources to those in lockdown. 

That would limit the economic and psychological damage. Instead, we are all forced to take extreme measures “out of an abundance of caution,” as so many school closure statements have said. 

Still, the lesson from my experience is that we don’t need perfect information – a concept that’s obviously an illusion at the best of times – just a sufficient amount, and of reliable quality, to make well-justified decisions.  

The caveat of uncertainty from my pulmonologist was always a given. There’s nothing he could say to take that away. What mattered is the absence of any information suggesting that I am at higher risk, and the fact that this was communicated to me by a professional who is well-informed and – this is key – trustworthy. It meant I could look upon all those terrifying stories I’d read about sepsis in a more rational way. There was nothing to say my immune system was more or less likely to experience such a self-destructive overreaction than anyone else’s. 

That, for now, is comforting. I’m still working from home, still rationing my family’s interactions with the outside world, and still practicing a far greater level of good hygiene than I ever did before. But the point is that I got useful information that gave me greater peace of mind.

It meant that in balancing the risk to my physical health from expanded social exposure against the need to protect my mental health and emotional wellbeing by staying close to my loved ones, I could, for now, err toward the latter. 

Emotional well-being

I want the same thing in the wider world. We need reliable, collective information to make community decisions that benefit our shared economic and social wellbeing. And that all depends on data – lots of it, of good quality. 

Finally, U.S. testing is ramping up. Without getting me started on the whole, stomach-churning CDC vs. WHO test kit debacle that delayed this process, let’s all now collectively think about how to get this new data out and into decision-makers’ hands. 

The good news is that information technology is one thing the U.S. does really, really well. America has the best data scientists in the world. Also, here’s where the good part of Silicon Valley comes in: there’s a rebellious instinct that’s always looking for workarounds, that’s biased toward “permissionless” action. It’s the instinct that essentially gave us the Internet.  These qualities will save us. 

‘Permissionless’ testing data

I’ll leave you with one example of this bias toward innovation that truly raised my spirits yesterday: a website created by Danny Yang – the founder of block explorer Blockseer. (For the crypto newbies reading this, a block explorer is a tool that makes it easier to read and follow the transactions recorded in a blockchain.) 

Danny’s creation, which you can find at coronavirusapi.com, scrapes official coronavirus test data in real-time from all 50 states and D.C. and aggregates them into easy-to-comprehend reports and charts. It is the first aggregator of this vitally important information that uses official numbers rather than news reports. Now, they’re looking into smart, blockchain-based solutions to timestamp the reports to reinforce the transparency, accountability and reliability around that data. That combination is what’s key: fast, comprehensive, easy to read, but also trustworthy.

Here’s a snapshot of what the home page looks like.

No permission was needed for this site. No official deal between the White House and Google was made. There’s no back and forth over the right outward-facing PR about a website whose capabilities are being overpromised by misinformed leaders. Just a quick and dirty solution to an important problem and a natural bias toward quickly publishing the information. 

It’s about getting access to the right data, making sure it’s trustworthy, and putting it out there to let the people decide. This reminds me of the spirit of the early days of the Internet, as well as of the early days of Twitter and other social media providers, before advertisers and surveillance capitalists took them over. 

Restoring that bias toward information and community action may well be the silver lining in this otherwise frightening experience. 

We’ll get through this, people. But the more trustworthy information we get out there, the quicker we will do so. 

#DataSavesLives