(Article published by Nicky Woolf with same title in Medium)
Fragmented, insecure, and proprietary healthcare data could be completely redesigned on a blockchain-based system.
Even the world’s best health systems are typically fragmented. “You have hospitals, community clinics, general practitioners, specialists, diagnostic clinics, and so on,” says Matt Jackson, who leads blockchain research at Canada’s Institute on Governance.
There are many reasons you might want to give someone access to your medical data. Maybe you just moved to a new city and want to give your new doctor access to your medical history, or perhaps you want to nominate a healthcare proxy in case of emergency or have your prescription sent to your pharmacy.
Some places, like the UK or Canada, have viable national systems for exchanging patient records, but those can be vulnerable to hackers.
In the United States, healthcare comes from a patchwork of private companies, which means the handling of patient data is even more fragmented. John Halamka, chief information officer at Beth Israel Deaconess Medical Center in Boston, Massachusetts, told MIT Technology Review last year that there are 26 different electronic medical records systems in his home city alone.
In 2016, Halamka teamed up with a group of scientists at MIT to try to find a solution to the problem using blockchain. They published their white paper on the subject in August 2016, laying out their proposal for a system that would help all those disparate databases exchange data — a project they called MedRec.
Andy Lippman, a senior research scientist at MIT, co-authored the paper with Halamka. The system they outlined was to use Ethereum software — which, unlike bitcoin, can integrate and execute smart contracts — to build a private blockchain, linking healthcare providers together and allowing them to share their data.
On this blockchain, each of these such instructions by a patient creates a specific smart contract on the blockchain that only the patient can cryptographically sign.
Security is one benefit: “Distribution makes the system more secure, because there isn’t a single place of attack or failure,” Lippman says.
Medical providers run a program module on their computer to access the database, as instructed by the smart contracts, which are initiated by the patient.
That module does three core things: First, it allows the healthcare provider access to the data when the blockchain is instructed to give it. Second, it executes the patient’s instructions as and when needed, sending data to a pharmacy or a specialist for referral — assuming the patient gives their consent. Third, the module allocates computing resources to maintaining the blockchain.
Taking Back Control
People close to the blockchain space often like to contextualize it by dividing the internet into three distinct eras.
The first, Web 1.0, is characterized by openness, based on a global consensus as to the mechanism for webpages. “Everyone agrees as a community that we are going to use HTML,” Lippman says, “and your browser can display pages from all kinds of different people, as opposed to one company making webpages one way, another their way.” However, as the internet matured, companies like Facebook and Google monopolized some areas of information — search data, social data — separating them into jealously guarded silos and databases. This is known as Web 2.0.
The era to come — Web 3.0, according to enthusiasts — will use blockchain technology to allow people to take back control of their personal information, returning the internet to its individualistic roots and breaking the database monopolies.
“The nice thing about medical records is there is no Facebook for medical records yet,” Lippman says. “So maybe we can, in a timely way, do what were doing, which is a universal, open, noncommercial design — almost as if were designing a web and HTML for medical records.”
“Web 2.0 is when a central authority essentially tracks you, uses that data to help you — and also monetizes that data for themselves by essentially renting the algorithms that result from it to advertisers,” says Diego Espinosa, CEO of Linnia, a startup that is trying to build an ambitious health and lifestyle data-sharing platform on the Ethereum blockchain.
“All of the Web 2.0 giants do that; that’s their business model. So Web 3.0 is: Now we own our data, we have agency over it, and we need permission for others to see it,” Espinosa continues.
“The reason blockchain makes that possible is we can have decent data that can also be trusted. The blockchain is an immutable database and has other attributes, like being able to have digitally signed attestations about us. Those two things have the ability for individuals to keep their data — but also have that data be trusted by others.”
Selling Our Own Data
“The most interesting feature of blockchain in the health sector is the ability of patients to own and control their own health information,” says Jackson, from Canada’s Institute on Governance.
“If all this information was linked to an identity patients control, they could decide who gets to see what. Maybe a knee specialist doesn’t need access your sexual health history. Blockchain could allow for this level of personal control.”
“Not to mention,” Jackson continues, “that patients could actually profit from their health and demographic data, with the option to sell it to health research studies or drug discovery.”
That possibility has occurred to Espinosa, too. Linnea, unlike MedRec, is a commercial company; while it started out as “a data protocol for longitudinal health,” it has since widened in the scope and scale of its ambition.
For Espinosa, Linnea has become an opportunity to come up with an entirely new way of approaching health — and life.
“The idea was that it has to start with tracking,” Espinosa says. “I’m not necessarily talking about all the ins and outs of data when you went to a hospital. I’m talking about your genome, your nutrition, your fitness data. Even what your mother’s pregnancy was like; when you were born; your parents’ genome. Your microbiome. All of these things are important to maximizing your health over long periods of time, and yet we don’t track them.”
That data would then be kept on the blockchain, with permission for its transfer given by the patient to a provider via the system, like with MedRec, with the bonus that it’s not just for healthcare providers — we could just as easily send our data to “an insurance company that wants to give you a reward,” Espinosa says.
“The holy grail for that is we use all this tracking to fuel machine-learning models,” Espinosa continues. “And those models will identify robust patterns that say, ‘If you do this in your twenties, here’s the impact in your fifties, so you don’t want to do that.’ And that causality, once it really gets established in people’s minds, can help them make the right decisions. Because right now it’s like, ‘I’ll do what I like today and worry about it when I go and see the doctor, but really my doctor is in charge of my health.’ And it’s like, no!
“If we own our data, we have agency over our data, then we also own our health,” Espinosa says. “And that’s a sea change.”