Your Medical Data May Kill You

Photo © Studio Romantic/stock.adobe.com

Your medical records need protection. Not from spies, hackers and nosy neighbors but from bureaucrats, politicians and all kinds of ‘data protection agencies’. They don’t care about you. They care about themselves. They have ‘bullshit jobs’ to protect – and may kill you in the process.

You’ve heard, read or seen the horror stories. The hospital couldn’t get the data because the doctor was prohibited from sharing them. Or (yes, it’s actually happening in 2022) they were allowed to send the records by fax only, and the fax machine broke down. And more. So people are dying. Even uncomplicated cases become lethal when neither the patient nor the treatment facility have the medical history and know what’s dangerous to this particular patient. In some cases a patient arrives in the ER and no one knows what the problem is. I’ve been close to a dozen such cases over the past few months and the experience is enlightening – and horrifying: The stories from the media aren’t exaggerated. Reality is worse.

Nothing new, really. Books have been written, reports and studies ordered, conclusions presented and plans made – for decennia. And the system is still broken. We have more data, better data, better tools, more technology, advanced equipment, improved facilities, universal communication, high availability – and more problems. Not with technology but with people and data. More specifically – access to data. Bizarre but not unique – everybody wants your data, no-one wants to share – and no-one seems to be able to (or willing to) fix the sharing problem. For a simple reason that no-one wants to mention: Those set to fix it are the same who created it. And they don’t want it gone – for the reasons mentioned above.

Which doesn’t mean it cannot be fixed. In fact, a fix is easy – from a practical point of view: We have every component, every ingredient. All we have to do is to eliminate the obstacles. If that sounds stupid to you it’s because it is. Put that way, the problem becomes obvious and those creating them become visible. 

For the record, I’m not into conspiracy theories. And this isn’t a theory, it’s a fact. One that became embarassingly evident when the world ‘discovered’ that Estonia had fixed it 15 years ago. How could a country of relatively modest means achieve what the rest of the world has been struggling with for (seemingly) ages? In a few years?

Two unique elements: A clean slate and a strong consensus. No turf wars, no tribal disputes between professionals, no history and previous bad (or good) decisions to ‘protect’. Just a single and obvious goal: Create a system that benefits the patients. Every time, all the time. It worked in 2008. It works even better in 2022 – and benefitted the country tremendously when the pandemic hit in 2020. And since day one, data ownership was clear: You.

So it’s not that it cannot be done or that it’s too expensive – for any country. So what else is holding us back? Ah, of course, there are the ‘brakers’ – the turf-protectors, the bullshit job protectors etc., every single person or group looking out for themselves and certainly not for the common good or the patients. But wait, that’s too simplistic, isn’t it? How come they get away with it? 

The answer hurts. It’s us – you and me. We allow this. We live in democracies, right? And we don’t fight for our lives, for our health, for sanity? It doesn’t make sense.

So here’s my (very simplified) recipe:

  • Focus: What’s important, what’s the goal? Preserve history? Preserve (political) power? Protect data? Save money? Save lives? Best possible health care? Build a healthy future and a fair system?
  • Clean slate: Of course it’s possible. It has been done, we can do it too…
  • Kill the ‘it’s not that easy’ argument. No-one said it was easy, but it’s evidently a lot easier than all the failed projects and project-dollars indicate. By the way, when did failure become a stop sign? It used to be a short stop on a some times long way to success, right?
  • Don’t reinvent the wheel: Someone else has done it already. Learn and adapt, don’t create and fail. And don’t fall into the ‘we’re so special’ trap. We’re not.
  • Understand the value of and importance of data: Solutions, systems, infrastructure, software etc. come and go, data remain – and evolve. Keep the data outside of, not locked inside the systems. In 3 years or less many if not all will be due for replacement. 
  • Single repository, regulated and shared resource – a natural monopoly like water pipes, roads, power lines, sewer and much more.
  • Take the fight, it’s worth it.

Oversimplified? Maybe, but I think it’s necessary in order to build understanding. Thousands of projects costing billions of dollars have failed because they lost sight of the goal. Or never had it in the first place. Or tried to accommodate or build around history instead of taking the fight. If we don’t take the fight, history will kill us. Literally.

Estonia is inspiring – and there are others. Interestingly, at the other end of the spectrum is the US. Not the world’s worst but possibly the world’s most unfair – and expensive health care system, as indicated by this graph from Scott Galloway’s acclaimed No Mercy, No Malice web – based on independent and widely available data sources:

Illustration from No Mercy/No Malice by Scott Galloway

This is 2022, almost 2023. We have all the tools, all the data. Are we willing and able? Willing to take the fight, able to replicate what the Estonians did? Of course we are. It’s your future – and mine.

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  1. Quit Pseudowork – Work on Things That Matter – mindset3.org

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