<\/p>\n
<\/p>\n Have you heard of any of the following patient data right \/ data management providers using ‘blockchain technology,’ i.e. technologies that promise to give patients greater control over their health data.<\/p><\/blockquote>\n Well, blockchains sure promise<\/em> it … but they don’t, in fact, achieve it. There are no blockchain systems that do this.<\/p>\n How do you tell someone that blockchains do not do this<\/em>?<\/em> How do you get them back to reality, from a place where this sounds like a reasonable question?<\/p>\n This particular survey<\/a> appears to be marketing for MintHealth,<\/a> a “decentralised health information” startup, which also \u2014 gosh, who’d have thought! \u2014 has an ICO<\/a> for a “security token offering”<\/a> (archive<\/a>).<\/p>\n But they’re just the latest in a long line of snake oil salesmen. I first encountered the idea<\/a> in 2016 \u2014 to quote chapter 11<\/a> of Attack of the 50 Foot Blockchain:<\/em><\/a><\/p>\n I sat in on one presentation by a Big Four accounting firm on the Blockchain in health care: three blokes (one with a tie, two without) talking about the hypothetical possibilities<\/em> a blockchain might offer health care in the future, all of which was generic extruded blockchain hype, and much of it Bitcoin hype with the buzzword changed. When an audience member, tiring of this foggy talk, asked if there was anything concrete<\/em> that blockchains could offer the NHS, they responded that asking for practical uses of Blockchain was \u201clike trying to predict Facebook in 1993.\u201d The main takeaway for the health care sector people I was with was swearing never to use said accounting firm for anything whatsoever that wasn\u2019t accounting.<\/p><\/blockquote>\n The idea was first put forward in November 2014 \u2014 and the current version of the concept seems to originate with the MIT Media Lab’s Digital Currency Initiative in 2015, as we’ll see shortly.<\/p>\n The “blockchain” is the data structure behind Bitcoin. It’s a ledger you can only add new entries to \u2014 plus a “consensus mechanism” to decide who gets to add new entries. That’s it. That’s all.<\/p>\n It gets weird because Bitcoin is a bit cultish, and literally based on conspiracy theories.<\/a> And that’s before you even get to the bit where the real draw is the promise you’ll get rich for free. People will talk any<\/em> magical nonsense if they think they might get rich from it.<\/p>\n “Blockchain” in business<\/a> is an attempt to market this idea as the solution to literally any organisational problem. This was originally to evangelise Bitcoin, but the big push these days is from consultancies looking to sell billable hours.<\/p>\n Also, there’s not in fact any agreed technical definition of “blockchain” \u2014 in practice, it really does just mean “whatever I’m trying to sell you today.”<\/a><\/p>\n If you want more detail, the simple non-technical introduction is this talk<\/a> I did for market researchers \u2014 that’s a 22-minute talk with slides you can crib, and some questions after. Blockchains are really simple<\/em>,<\/em> and the usual reaction is: “What? That’s not magical at all. How do they get all of this nonsense out of that?”<\/p>\n The health care pitch is mostly “unalterable record” and “no central control.” Neither of these is really true enough for the job \u2014 and neither is what you’d actually want.<\/p>\n Patients worry about their personal data. They want their doctor to have everything the doctor needs to help them \u2014 but that data is highly<\/em> sensitive and personal, and it’s nobody else’s business. It’s not even the business of other medical personnel in the same organisation, unless they’re actively working on your case.<\/p>\n The obvious way to control access to patient data is a conventional centralised database, with a suitable structure of access control lists (ACLs) \u2014 who’s allowed to see what, and when. You will be unsurprised that this is precisely how the National Health Service (NHS) in the UK does it in practice.<\/p>\n There are important issues with large central pools of data \u2014 specifically, data protection, susceptibility to leaks, and what a private service provider may have access to. The NHS databases are arguably too centralised.<\/p>\n The hard part in practice is to come up with an ACL structure that’s comprehensible and usable by mere human NHS employees and patients \u2014 and which meets their social expectations.<\/p>\n Blockchain proposals tend to claim that the patient’s threat model is the healthcare providers themselves. Nobody likes being messed around by bureaucrats \u2014 but cryptography will save you!<\/p>\n The American-style health insurance industry is another excellent bogeyman \u2014 it’s clearly evil and superfluous. You can sell technical “solutions” to this 100% political problem, whether or not the solutions would do a single thing about it.<\/p>\n So \u2014 how would you do any of this with a blockchain? And what does a blockchain in particular<\/em> bring to the problem? This is where the various projects’ white papers start getting a little vague.<\/p>\n There’s the brittle-but-obvious ideas \u2014 like encrypting data, or its hash, in a message field on a blockchain, with conventional PGP-style public key encryption. This means you could permanently<\/em> lose your healthcare record as easily as you can lose your bitcoins, just through a fat-finger fumble.<\/p>\n I think of users like my 85-year-old mother \u2014 who is reasonably competent and has all her marbles, but can barely work a computer, let alone manage PGP cryptographic keys.<\/p>\n And what do you do when a patient is incapacitated, or unable to consent?<\/p>\n You can’t provide customer service \u2014 fixing basic human error \u2014 in a decentralised system. If you need problems to be fixable \u2014 and, of course, you do \u2014 there\u2019s no reason not to just use a centralised system, like the present NHS database.<\/p>\n And if problems aren’t fixable, your patient outcome numbers are only going to be negative.<\/p>\n The problem is not the mechanism \u2014 it’s the politics of who gets access to what. The legal structures, and the social structures. These needs are complex and often inchoate, and not easily reduced to a few lines of Solidity code.<\/a><\/p>\n It’s easy to put already-encrypted data onto a blockchain \u2014 the entire hard part of the problem is digital identity that is usable by ordinary humans. It turns out that replacing a social institution with a computer program is difficult.<\/p>\n So the usual strategy is to write hundreds of pages about how well you’ve done with the easy bits \u2014 and the hard bit’s coming some time in the astounding future.<\/p>\n I won’t go into great detail \u2014 but almost everything about blockchain proposals for medical records is laughably illegal under almost any health information privacy law.<\/p>\n Every American I asked who deals with this stuff went “what on earth,<\/i> HIPAA<\/a>, HITECH<\/a>” and “do these people know anything about this at all?”<\/p>\n The answer is: no, of course they don’t \u2014 because blockchain promoters pretty much never do.<\/p>\n Blockchain promoters are never<\/em> going to get US institutional providers to adopt systems that could possibly<\/em> violate privacy laws. I can’t overstate how seriously the providers take HIPAA.<\/p>\n Systems that are adopted will be built from a standpoint of complete regulatory compliance \u2014 and whether the backend database runs on something blockchain-descended will be absolutely the last thing anyone worries about.<\/p>\n The very earliest medical blockchain proposal my readers and I can find is a November 2014 blog post<\/a> by Ryan Walker. This outlines some of the present-day promises.<\/p>\n Factom claimed a medical blockchain initiative, in partnershp with HealthNautica, in April 2015<\/a> \u2014 based merely around adding encrypted records to a blockchain.<\/a> This press release was retracted<\/a> when HealthNautica found out about it. (Good thing Factom didn’t announce it on a blockchain, then.)<\/p>\n A May 2015 presentation by Melanie Swan, “Digital Health Revolution: Blockchain Health and Crypto Wellness Futures,”<\/a> promises all manner of ill-specified nonsense, some time in the astounding future, with magical added blockchains.<\/p>\n But as far as we can tell, patient zero<\/a> for the present-day forms of medical blockchain claims is a November 2015 presentation by the MIT Media Lab’s Digital Currency Initiative.<\/p>\n Chelsea Barabas,<\/a> then at the MIT Media Lab’s Digital Currency Initiative, gave this presentation<\/a> at Singularity University’s Exponential Medicine<\/a> conference.<\/p>\n Barabas’ talk seems to be the direct ancestor for many claims about medical blockchains since. Not just the ideas<\/em> \u2014 including some technically bizarre ones, like blockchain-based logs of all accesses to patient data\u00a0\u2014 but some of her phrasings<\/em>.<\/p>\n Barabas’ talk also gives away much of the thinking behind the advocacy of medical blockchains \u2014 it’s a weird version of Bitcoin libertarianism.<\/p>\n The Digital Currency Initiative was founded to fund Bitcoin core development.<\/a> This would be why MIT’s pitch here \u2014 for software that’s supposed to make administration work better \u2014 is so heavy on talking up Bitcoin.<\/p>\n (If anyone ever tries to tell you that “blockchain” is totally separate from Bitcoin \u2014 it’s always the same people talking up both of them, in the same venues.)<\/p>\n <\/p>\n![\"\"](\"https:\/\/davidgerard.co.uk\/blockchain\/wp-content\/uploads\/2019\/01\/pcha-survey-blockchain.jpg\")
<\/a><\/p>\nWhat can a blockchain do?<\/h3>\n
The problem with patient data<\/h3>\n
How would you even use a blockchain for this?<\/h3>\n
It turns out that medical records regulations exist<\/h3>\n
The source of the disease<\/h3>\n
Chelsea Barabas: Patient-Centered Health on the Blockchain<\/h3>\n