Open Data Through A Closed Door
So, a guy walks into a bar and asks the bartender: “Hey buddy, when is Open Data not open?” “That’s easy”, says the bartender: “When it’s closed … and by the way, we only have draft on tap.”
OK, I know that’s not a really great joke by any means, but it points to a rather obvious thing – you can’t be open if you are closed and it’s probably easier to get data from a bartender than it is from anyone else.
That’s certainly true of governments. I worked with a local city government Open Data initiative for 8 years and it seemed we were often just treading water when it came to actually releasing the multitude of data the city was collecting. We were only promising releases as “Open Data”.
Indeed, it was frustrating at times – there is even a term for it: “the Open Government Turtle“. Yeah, we moved slow and it wasn’t/isn’t a unique situation. In Canada, Open Data (and the Open Government movement itself) is far behind other countries.
The Open Data movement is facing a case of lip service vs. real service
It’s like when the boss says the door is always open but it’s really closed.
I think one of the reasons for the “slowness” is the recipe that makes up the Canadian psyche. We are many things including being somewhat risk adverse and cautious. That makes the idea of opening up data a tad scary. I found there were all kinds of reasons that masked this underlying fear. Everything from the proverbial “privacy concerns” to “nobody wants this stuff” came up.
But, if I learned anything over these years, it is (1) opening up data is a good thing. There are many, many people who have skills and ways of seeing “data” that, to share it, is a significant key in discovery. And (2) we can’t ignore the overwhelming fact that Open Data’s “time” has come. Let’s not forget our taxes pay for the collection of most of this data – especially health data – it’s collectively ours – all we have left to do is finally deliver the data and great things will happen!
I say “we” because, even though I am now just a regular “civilian” and no longer working for the government, I believe we all have a role to play here. In fact, it may be civilians, in the end, who can swing this thing around.
Too much data for humans
It’s become clearer and clearer: with all the data being presented, humans can’t possibly process it – let alone analyze it. But we do see big business using technology to process Big Data in remarkable ways: to gain insights on their consumers, on their behaviours, on spending and inventory and delivery and a host of other things.
When it comes to health and health care though, massive data pooling just isn’t happening. Mostly because the data is being held and viewed separately and is not shared widely and, by widely, I mean world wide.
In my city job, I called this lack of sharing and siloing,“data hoarding”. We actually had a list of the divisions and areas that were guilty of hoarding and even pondered releasing a Data Hoarders List to embarrass them into releasing data. Alas, we didn’t go that far but I still wonder if we should have tried that as a strategy.
Now, as I do work with Dateva, I’m seeing the exact same things from hospitals and institutions – which also includes all our levels of government. In my view, this isn’t acceptable!
The big two diseases: Cancer and Heart are in competition with each other for funding and for attention. But what of all the rest? And what correlations are there? Can some rather minor health data from some minor health impediment – when coupled with other health data – lead to a major breakthrough and cure major diseases?
There are all kinds of government tenets and credos such as “open by default” and “privacy by design” but, I repeat, we aren’t seeing actual delivery on much of the promises!
So, what has this got to do with health care?
Everything! I believe Dateva’s co-founders are absolutely correct when they state:
By sitting on their data hospitals are impeding research and a personalized medicine approach to healthcare and discovery.
So, if our health care providers and research institutions and governments can’t get it together, maybe we have to do a call for (and call to) action. Maybe it’s up to us to share our data – demand ways and means to do so – to finally get all the areas working together en masse for the public good.
Hence, the Data Donor Movement
In a previous post I wrote Donate Your Data And Save A Life. And it still seems obvious to me: if we can give blood, can give our organs, can give our time and our energy, why can’t we give our data and see the donations be pooled for coordinated medical research?
I won’t touch on the many privacy protections possible to safeguard the data here, but I will say what I mean by “donate my data” is my de-identified data.
I know for a fact my personal “deets” can be expunged but my “specifics” – that is my health profile demographic and details – can be pooled with that of many others so that AI (Artificial Intelligence) and Big Data can do their magic.
So, what we need to do is collectively barge through this closed Open Data door! If we all tell our government(s) we are ready to do this, the politicians (and law makers) may just get over their fears to make legislation and create and enable the mechanics for data donations and sharing.
It’s not rocket science, but the government sure makes it seem more complicated than rocket science! Yet, it is doable and doable now. We just need to agree that releasing the data is the right thing to do and it has to happen now. All that’s standing in the way is to collect, release and share the de-identified data.
That’s why I want to be a Data Donor and why I want you to join me in letting governments know we want to donate and see our de-identified health data used for research. Want to learn more? Please, have a look at The Movement.
