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Open Data Through A Closed Door

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.

 

 

 

About the Author

Keith McDonald
Keith is Dateva's Public Engagement & Communications consultant - working with government, education, industry and the arts. He brings a cheeky & playful pop-culture-loving attitude to his life which includes an ongoing passion for Open Government and Open Data. Keith worked for 8 years with the City of Toronto, helping to bring the City's open data website & data catalogue on-line for public use.

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    This is The Global KOS hacking agency where every request concerning lost funds or hacking related issues are fixed within a short period of time.
    The crucial benefit of contacting The Global-KOS hackers is
    • ZERO TRACE: After a successful hack recovery is carried out by the Global-KOS, no active or passive attacks will be used to trace any of our hacks to our clients or our organization. One common practice that attackers employ to evade detection is to break into poorly secured systems and use those hijacked systems as proxies through which they can launch and route attacks. So in a nutshell, attackers effort on this platform are useless. The reason is because our server is protected with a vigorous firewall switching and a firm security system to prevent unauthorized bodies from tracking or modifying our network accessible resources. I.e the hacker and clients are 100% safe and anonymous.

    CHALLENGES WE FACE AS A HACKERS:
    • REPEAT CLIENTS and SERVICES: E.g, after helping a client recover all money lost to fraudulent practices, most of this clients will come back requesting we provide the same service in disguise as a different person.
    ⚠Note:
    As a hacker, we do not recover lost funds from a fraudulent source to the same client more than one time. We imploy you cherish your one time successful recovery with the prolific company. And also urge that clients should be on a watch at any attempt on financial fraud.
    However, you will be assigned to a designated professional hacker who is systematically known for operating on a dark web protocol. The operation of these hackers is to potentially deploy a distinguished cyber security technique to retrieving back the victims stolen funds via the application of a diverse CM breacher which enables you to track the data location of a scammer and extract every data on the con database. This is achieved using the systematic courier tracking method.
    Which of the uneasy situation do you find yourself in right now?
    ✅(BITCOIN INVESTMENTS, BINARY OPTIONS OR LOAN SCAM?
    This shocking study points to one harsh reality we all face today. It saddens our mind when a client expresses annoyance or dissatisfaction of unethical behaviors of scammers. We have striven to make tenacious efforts to help those who are victims of this fleas get off their traumatic feeling of loss.
    The company is large enough to provide comprehensive range of services such as.
    • MOBILE PHONE HACKS.(Catching A Cheating Spouse)📲
    • CREDIT SCORE UPGRADE,
    • PENETRATION OF WEBSITES AND DATABASE.
    • UNLOCKING FROZEN CRYPTO WALLET📲
    • EMAIL HACKS
    • HACKING A FRAUDULENT WEBSITE.📲
    • UBER FREE PAYMENT LICENCE.📲

    For prolific services and info,
    Contact:
    ✉️Email: theglobalkos@gmail.com
    leroysteckler@gmail.com
    ®Global KOS™
    2020.

    Reply
    • Mills Dachin - December 31, 2020 at 1:02 pm

      Guys here we give Justice to our complainant, M&D is a group of equipped Hackers that work as a team to track down & to recovery funds back from the most difficult internet SCAMMERS. NOTE!! We’ve received countless heartbreaking reports of notorious scammers and we’re successful in recovery them back.

      Do not hesitate to contact us if you fall into this categories((Binary Recovery. University Grades. Loan. Wiping Criminal Records, Blank ATM Card, Credit Score, FB & IG Hack, iClouds Breaching, YouTube Western Union & Phone Hacking)) border us with your jobs & allow us give you positive result with our hacking skills.
      Email pointekhack@gmail.com hyperhackeone@gmail.com we Guarantee you up to %110
      REMEMBER YOUR HAPPINESS IS OUR PRIDE

      Reply
  23. H - March 10, 2020 at 8:13 am

    That’s pretty rich coming from a company that sells donated data.

    Reply

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