The Future of Decentralized Healthcare: How DeFi will pave the way for a new era of medical services
There’s a good chance that this decade will be remembered as the start of the decentralized age of computing.
Blockchains are already being applied to hundreds of new decentralized apps, protocols, and systems meant to replace existing monetary systems.
New technologies like decentralized finance and cryptocurrencies are experiencing tectonic shifts in short periods of time. Stability in the industry will bring new tools that can benefit whole new sectors. The healthcare data industry is one of the largest opportunities for these rapidly maturing systems.
Healthcare has already been turned on its head dozens of times. But decentralized systems have the potential to give it what it’s really always needed: data in the hands of the patient.
The Problems
There are so many issues with our current health system, it’s hard to know where to start.
One major flaw is that there is no universal standard for healthcare data that can be read by every provider.
Since the data doesn’t always translate between systems, changing providers or working out payment for complicated procedures requiring multiple physicians is not straightforward.
Seeing a specialist is not as easy as it should be — in many cases, you might have to fill out your health history from scratch, for a clinic you might only visit once.
Another issue is that private health care is not always guaranteed to be private. Providers of health aren’t necessarily the best providers of security, and the giant pools of personal data that they possess are a big target for hackers.
This asks every patient to put their personal information in a precarious spot. Or more accurately, many different precarious spots — as their data is stored, forever, with every provider they might visit.
In the United States, HIPAA-compliance promises patient confidentiality, but makes it close to impossible to share data with a community of care — for example, other people with the same condition. This is a huge missed opportunity.
Having a disease is a long journey — and if you can talk to someone who is further down the same path as you, you can avoid a lot of the same research, missteps and time.
Some conditions, like diabetes, are widespread and well-understood enough that people can talk about it with support groups and communities. But most conditions aren’t so common, and would really benefit from that kind of localized teamwork.
By locking people out of their own data, we’re actually harming people who would like to understand their own bodies. Keeping this information behind a locked door is the opposite of compassionate care.
In addition, asking patients to memorize important and dangerous drug interactions and manually fill them out at the beginning of an appointment is possibly dangerous. If they forget, they risk injury or extreme pain.
When my dad was in the hospital for cancer, he discovered a bad interaction between two drugs. He didn’t have a way to mark this down, and there wasn’t an easy way to mark it in his file. The information didn’t reach the night shift nurses, and she gave him the same drug again. The result was the darkest, most painful night of his life.
How It Could Work
Owning your own health data makes strategic sense. It means that data doesn’t stay with a doctor, who is an important part of the process, but can only give occasional input. It puts that data with the individual who has the most incentive, and the most potential, to use it wisely.
Imagine: rather than your medical data being something nebulous, stored across dozens of medical networks which you’ll never have direct access to, it’s all stored in a digital Health Ledger you own and have complete control over.
A Health Ledger like this would ensure that you are the sole owner of your data: your dental records, your medication history, your X-rays, your bloodwork, your DNA — every last part of yourself belongs entirely to you.
When you meet with a specialist, rather than having to completely fill out new medical records, or have them transferred over from your primary care provider, you can decide what info you’d like to share with them.
When meeting with a doctor for the first time, you give them temporary access to your basic file. If they need a more specific record, they can ask you for it, rather than having to transfer it from some clinic’s private database.
If you need to see an optometrist, you could choose to share only the relevant information, and only for the appointment. Any prescription would be kept with you, and would be completely portable. You can easily take it to a new doctor.
If there’s a new program which can screen for potential problems — for example, susceptibility to cancer — you can be notified as soon as the option becomes available.
Your data doesn’t sit in an unseen database, at risk of being hacked and compromised. You can transmit your data for only as long as the program takes to analyze it.
When the doctor has information for you — test results, diet suggestions, or treatment plans — they send those results to your personal treatment plan, which is always available on your home computer.
Rather than visualizing your health as a record kept somewhere out of sight, you could start to think of it as something which is always a part of you — giving you more incentive, and more agency, to actively work to improve it.
The Quantified Self Community and Personal Data Ownership
The idea of owning your own healthcare data isn’t exactly new.
My favorite community of people pushing the limits of traditional healthcare space is the Quantified Self Community.
I attended a 2013 QS Conference in San Francisco. It was full of incredible surprises.
Professional athletes were owning their own data and putting it into feedback loops to improve their own capabilities.
One of the speakers, Larry Smarr, gave a talk about how he discovered he had Crohn’s disease before his doctors did. “Doctors should be asking, ‘What are your numbers?’ not ‘How do you feel?’ The idea that you can feel what is going on with you is so epistemologically incorrect.”
But the best example I saw was of a small group of individuals that all had the same rare disease.
Because the industry didn’t have enough funds to research their problems, they had pooled together their own data and were working to solve the problem themselves.
Many of them were PhDs or healthcare professionals, and understood that the best way to heal is as a group, with people sharing and collaborating openly.
After the conference, I was able to access my raw data from 23andMe. I then shared that data with a series of genetic analysis apps that were being developed by graduate students at various research universities.
One of the apps I shared my data with showed me that I was missing an important genetic aspect — one that increased my likelihood for the autoimmune disease Multiple Sclerosis.
I already knew that MS ran in my family, but the data analytics gave me a whole different perspective about why I might be at risk, and how I could reduce my future risk for MS. I changed a lot about my diet after this discovery. The superpower of owning and being able to share my data with a community tool made me feel that I had potential to manage myself.
How Can We Fix It?
The tools to solve this problem are being built right now. The same systems developed by the decentralized finance community could be used to prototype and test ways of storing other kinds of data.
Building Health Ledgers require us to rewire how we think about developing software. It’s important to focus on protocols, not APIs, and through innovative, forward thinking concepts like blockchains, not cloud services.
Storing all data in the cloud is becoming more expensive, less secure and less popular with believers in Data Sovereignty, who would prefer to keep their information safe and only share it when absolutely necessary.
The ideas already being practiced with cryptocurrency are possibly even more well-suited to highly personal information like health data.
Cryptocurrency wallets are on track to being a built-in part of the web experience in just a few years. Imagine how useful it would be to have a healthcare component to that wallet.
The only difference is, instead of a payment, the data transferred is information from your medical history. Healthcare providers can push updates to your file using your wallet address, or request updates from you if they need an update on your condition.
If you need to change doctors, or get a second opinion, or see a specialist, you can give them access to your file, rather than have that information exchange be something completely out of your hands.
This article explains how some hospitals are already using blockchain technology to keep their information secure. “Decentralized storage ensures that each block contains only a small informational piece to a much larger puzzle, limiting hackable data to almost nothing.”
A Health Ledger system could use similar methods to protect user data. If someone hacks a provider’s database, they’ll only get access to what you shared during the appointment.
Less of your data is at risk, and for a shorter period of time, making it less attractive to hackers.
It might be tempting to use a biometric passkey, like using your fingerprint to open your phone. But passkeys should not be biometric. There are some cases where you don’t want to be tied to your data.
Systems like this would work best in collaboration with existing medical companies.
Regional healthcare provider Zoom+Care is a good candidate — they’ve already pioneered in the patient care space, they have their own mobile app which could be easily attached to a wallet protocol, and they have the infrastructure to build an interoperable standard.
By the time the decentralized finance market has figured out pragmatic protocols around security, authorization, and data sovereignty, healthcare will be able to use same foundations to build new healthcare systems.
What are the Barriers?
When we get used to specific ways of thinking, it can be hard to change to a different model.
Just as putting credit card information into a website might have been unthinkable in the days of the early web, it might be hard to imagine a system which stores all of our data in a private wallet.
But before the cloud, we used to store everything on our home computers. We couldn’t imagine using cloud technology for a fraction of the things which are now commonplace.
Decentralized data is not the Cloud. The Cloud is a proxy for centralized services run by large corporations run far away that you have to trust. The Decentralized web is more like BitTorrent or Napster. It is not run by one service, and you don’t have to trust a single party.
Cloud computing might have some efficiencies of scale, but Decentralization is hyper robust. There’s not one point of attack. Data stored on a Cloud service can be taken away at any time, for a violation of any terms. Owning your own data on the Decentralized Web means that nobody can take it from you, not the government or anyone else. In many countries, this is an increasingly important issue.
Almost every service we use stores our data, then charges a fee to get it back. Even many free apps have no offline mode, forcing users to share their data at all times, even if they would prefer to keep it to themselves.
At some point it will be cheaper and much safer for each of us to act as our own personal servers — especially when it comes to our medical info, the most personal data of all.
Conclusion
We’re on the verge of the Decentralized Age. The world 10 years from now will look very different from the old fashioned future predicted by pop-journalism, The Jetsons, and corporate advertising. Inverted innovation models have a way of dramatically transforming all-encompassing systems in new and unexpected ways.
With the DeFi movement paving the way to the next iteration of the internet, we’re looking at a new age of data centered on the individual. The power of owning our own data can help us create new possibilities for community care.
It’s not that we’re not getting care from providers, but that we’re entirely at the mercy of the services from those providers. We can’t take our data elsewhere, try new services, or work with our data in our own communities. With a decentralized model, we’ll be better a position to care for ourselves.
This is the first post in a series about decentralization and ledgers. The intention is to spark a discussion about new models for existing systems.
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Thanks to Anselm, Kate, Matt Mankins and Ben Greenstein for feedback on this post.
