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Blockchain

You can now sell your medical data through blockchain


TextJosh Baines

But at what cost?

Welcome to the Dazed Beauty Digital Spa. From the role of placebo in extreme wellness to the problem with our cannabis obsession, here we explore the complexities of the wellness industry and how it might evolve.

One of the more difficult things to accept about life is that you have to do it with a body. You can change your body, through diet, exercise, modification, mutilation, but the fact remains that until you die, you’re stuck with it. Even in death we’ll leave a physical trace, covered in six feet of dirt but still real, still there, still identifiably the remains of a human animal.

Nothing is more real than the body. And as such, nothing is closer to a genuine autobiography than your medical records, the notes that follow you from birth to the grave. But like all autobiography, these records are prone to misremembering. By their very nature – by human nature – they are selective. Not all of us choose to visit doctors when we perhaps should, shying away from being confronted by the occasionally wretched realities of the thing we carry ourselves around in, preferring to cloak ourselves in a comforting sort of ontological darkness. And even when we do, we might not receive an accurate diagnosis.

So far this year I’ve had recourse to visit two different GP surgeries in two different parts of the country for two very different reasons; a diagnosis of pityriasis rosea and an underwhelming minute long discussion about anxiety and depression that ended with me being given a URL scrawled on a piece of paper by a harried receptionist and packed off into the dank dismal depths of a Thursday afternoon in January.

The biography available to each of those GPs does not necessarily match; they have been presented with fragmentary accounts of a physical whole. In addition to GP records — which the NHS states include information about your “medication, allergies, vaccinations, previous illnesses and test results, hospital discharge summaries, appointment letters and referral letters” — there are Summary Care Records, and the records created by any specialists you may have been required to see.

However, change is afoot. One of the more strange (and certainly more dystopian) advances in the hyper-atomised and increasingly privatised healthcare sector comes in the form of blockchain technology, which is now being deployed to give patients both total control over their medical records, and the ability to make money off the back of them.

"The more data you willingly — and, in line with the general set up of blockchain technology, safely and securely — give up, the more tokens you accrue"

An open, decentralised, verifiable database of transactions — a kind of fiscal Fort Knox, if you will — blockchain sees incredibly secure and efficiently transferred information threaded from block to virtual block, creating an unbreakable chain which records everything from late-night purchases from the deepest reaches of the dark web, to the exchange of highly sensitive data.

In the healthcare sector companies like Iyro and Medicalchain are looking to use the A-to-B nature of blockchain to eradicate the aforementioned problem of data fragmentation, arguing quite rightly that incomplete records lead to misdiagnosis. Misdiagnosis is inconvenient at best, and fatal at worst.

Here in the UK, it was recently reported that four out of 10 cancer patients had been diagnosed incorrectly at least once before an accurate diagnosis was made. This costs the NHS money, and the patient valuable time.

In addition to (theoretically) laying down the foundations of solving the misdiagnosis problem, these companies seek to offer users a feeling of control. Sign up to one of these services — be it the two above, or competitors like Embleema and HealthHeart — and you can begin to take ownership of your records, and have a say in who has access to them in the future. In just a few clicks you’ll have an account in which to begin pooling data, and doling it out to interested parties.

Medicalchain was co-founded in 2016 by a former practitioner at Leeds General Infirmary. Promising to “maintain a single version of the truth,” and already working with the Mayo Clinic amongst other hospital groups, it gives users peace of mind when it comes to knowing that their records are easily transferable between doctors, pharmacists, and insurers. However, research institutes are involved, too. And this is where it gets a bit worrying.

Those institutes are paired with users prepared to swap their data for what the company calls “MedTokens.” These are currently valued at $ 0.011316, and users can store their tokens in many of the cryptocurrency wallets on offer. They are then accessed in the way that any such currency is.

The more data you willingly — and, in line with the general set up of blockchain technology, safely and securely — give up, the more tokens you accrue. “Patients will be given the ability to unlock the monetary value that their health data holds,” promises the MedicalChain website.

This, they argue, means users will be “more engaged” with their health conditions. This, I argue, marks a bold new territory for healthcare, and for humanity at large. Most of us would consider ourselves pretty well engaged with health conditions and as such, the idea that we need financial incentive to consider our own physical faults and failures is somewhat alarming. The gamification of our very selves is here, and it comes in token form.

"Wherever your politics sit when it comes to free healthcare, these services force us to consider a troubling question: how much are we worth?"

Given that data is commercial gold, and simply being-in-the-world now goes hand-in-hand with producing data — ‘data’, here, acting as a synecdoche for all our individual and collective worries, desires, needs, wants, anxieties, fantasies, hopes, dreams, disappointments, regrets — in the gaping maw of the corporate machine, why not monetise your biology?

X, a long term senior NHS employee isn’t so sure about the whole thing. “The idea makes a strange sort of sense,” he says, “but only if you are in total control, only if you know exactly what the set up is, and what legally is and isn’t allowed.”

Blockchain enthusiasts would point out that this is the entire point of the technology: you do have control, and you can see where the data has gone. After all, this is the entire point of the system willed into being by the still-mysterious Satoshi Nakamoto back in 2008: decentralise data, and allow a greater level of individual ownership. This, in fairness, is what the services in question do.

Iyro, for example, offers prospective patients “Complete access & control over one’s own medical record,” in addition to access to “interconnected systems [which] allow for highly effective treatment options,” whilst maintaining that all records willingly given over are then “secured with modern cryptography.”

While X admits that data is already “constantly” being moved from place to place, and is acutely aware of the issues this can generate, he is insistent that, “monetising this data within the context of a system that prides itself on being free at the point of delivery is simply wrong.”

In other words, since the NHS tends toward a payment-free model of healthcare, and given increased levels of privitisation within that model, we should —as patients, as users, as funders of the NHS — have every right to feel concerned about a newly devised system in which individual gain (however small) can be garnered from a service intended to provide for all with a level of equality.

But wherever your politics sit when it comes to free healthcare, these services force us to consider a troubling question: how much are we worth?

Now that we can sell the sad and sorry secrets of our body for thirty pieces of silver to any pharmaceutical company or research institute that offers to pay promptly enough, this is something we’re going to have to grapple with on a regular basis. In offering up our bodies, with their attendant flaws and failures, to unscrupulous third parties, are we not explicitly accepting the fact that each of us is now, in the eyes of corporate culture at least, little more than data to be extracted?

"This, arguably, is corporate evil at its most self-evident"

“People are desperate for money and a better life,” says Y, who works in the psychiatric care sector. “So I can see why it’d be tempting. Even if I personally think that most of these companies and institutes are evil.”

The nature of medicine means that many of us place an inordinate amount of faith in companies of this kind: we need the occasional miracle that it seems only they can provide. It’s arguable, then, that we can (and often are) be taken advantage of.

Look at the American opioid crisis — a crisis that we could easily sleepwalk into here in the UK —  for a prime example of why we should retain (semi) healthy scepticism about why pharmaceutical companies and researchers want with the data we’re now able to send their way.

The terrifying rise of OxyContin addiction in America’s more rural pockets, a story told with heartbreaking clarity by US journalist Beth Macy in Dopesick, is just one example of how profit (in this case, the profits of Purdue Pharma) has a tendency to come before people. Another would be the price hiking of drugs by corporate pharma to the point at which they are inaccessible to those who need them most. This, arguably, is corporate evil at its most self-evident.

Y goes on to say that when it comes to transparency, we shouldn’t have to rely on third-party sources. Here in the UK it should, theoretically at least, be the duty of the Department of Health and Social Care and its attendant regulatory bodies to ensure that the transparency we transparently deserve is a given. “The thing is,” Y tells me, “they historically fail to do this.”

And so your Embleemas, Iyros, and Medicalchains prey on not just our innate worries about the fact that one day our body will fail so catastrophically that we will cease to exist, but also — and this far scarier — on the knowledge that when the systems we rely on for our health start to feel the strain, each of us is capable of turning toward technology.

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