A “Decentralized” EHR System — What Does It Look Like?
Let’s have some fun with this one. Since one of my favorite passtimes is drumming up ways in my head to disrupt traditional, legacy-gated industries with enormous regulatory hurdles, I figured I’d devote this post to examining how a “decentralized EHR” would work (in theory). This is a direct follow-up to my previous post on NFT use cases for patients so if you haven’t read that article, please take a look before continuing on. In order to properly construct what a “decentralized” EHR would look like, I want to first examine the current landscape of centralized EHR players & set the scene for our contrasting system.
Present Day: The Big Three
We can trace the genesis of today’s EHR architecture to 2009, where the Obama administration led the US on a push towards a digitization of all patient data with the American Recovery & Reinvestment Act. Bundled into this act was the Health Information Technology for Economic and Clinical Health (HITECH) Act — which provided more than $35B in incentives to promote and expand the adoption and use of EHRs by eligible hospitals and health care professionals.
Years later, the success of HITECH is still unclear. However, what this did lead to was an injection of capital into the development & establishment of electronic health record systems. Looking at the top EHR players by market share, we see that Cerner & Epic make up 54% of the market. With another 16% taken by Meditech, we have almost three quarters of the US Hospital EHR market being dominated by these three players. Now besides the clear issue of a lack of diversity in product selection amongst health systems, the true issue with the present landscape is little to no incentive for cooperability amongst these companies.
When we think about the dynamics of healthcare, this market structure makes all the sense for corporate shareholders and no sense for patients. To illustrate an example, let’s say one hospital uses Epic & another hospital uses Cerner. If I am the CEO of Epic, why would I want the hospital using my product to have any sort of interaction with a competitor like Cerner? What if the physicians like their interface more? What if Cerner captures more robust patient data? At their very core, these companies compete directly on the qualities of their products, from their user interfaces to the features & services they offer. Their main concern is to capture more clients on annually recurring SaaS licenses & drive profits for shareholders. If they can do this on the backs of patients, physicians, and healthcare workers — then so be it. And this has seemingly been the case, since doctors and nurses now spend a majority of their time interacting with EHR systems and very little time actually talking to patients.
What started as an efficient way to attempt to capture, store, & record patient data has turned into a race to the bottom for the workers that use it. Vendors of EHR software as well as hospital system leaders are at fault here. In a survey of Healthcare Information Exchange (HIE) leaders, 25% stated that health systems routinely coerce providers to adopt and use certain EHR technology rather than simply make it possible to collaborate across these technologies. Vendors have also engaged in information-blocking practices — like intentionally designing products to be siloed or charging high fees for providing collaborative capabilities (this has been made harder with the 21st Century Cures Act, but still).
Interoperability, the initial main selling point of EHR systems, has not been achieved after 13 years of the enacting of the HITECH Act. For comparison’s sake, since 2009 we’ve managed to convince the entire country that hopping in a car with a stranger is completely safe (and socially acceptable). How much longer will it take? Or is the truth that we need to face rather that there are no incentives for these EHR companies to work together?
The Revolution: Patients Own Their Information
Now before I begin this section, I want to preface with the following disclaimer: I am not a blockchain developer or expert. I am a blockchain enthusiast — I use NFTs & interact with software wallets. I am a second year medical student & am currently on a gap year pursuing a Technology MBA, therefore I may get some details wrong or inaccurate. If this idea was perfect, it would already be built and I would not be writing this. And if I could build this system myself, I also would not be writing this.
Awesome, with that out of the way — let’s get into the fun. A “decentralized” EHR, according to yours truly, would look like the following:
- Patients have an blockchain health “account”, that can be carried with them on a blockchain wallet, hosted on a secure & private chain. There are two flavors of blockchain wallets — “software” wallet & “hardware” wallets. Either of these would work, although in this architecture I’d opt for a “hardware” wallet due to better user security. If these terms sound foreign, check out this beginner’s video on cryptocurrency wallets to get up to speed.
- In this world, there are no boundaries for your health information. Your blockchain wallet can be brought to any hospital, physician practice, med-spa in any state, country, planet— you name it. You are not a patient from “Big Name” hospital that has your records — you are a patient, period.
- On this blockchain wallet, you’d have all of your healthcare information from the day you were born. Your past medical history, any medications, allergies, surgeries, family history of genetic conditions & disease, past notes from visits & hospital stays — you get the idea. It would be a living, breathing document that continues to be updated as needed. This would be stored as an NFT token, with unique metadata corresponding to your personal identifiers (just like it is done currently). If you cannot verify your personal information, you cannot unlock access to your wallet. Simple as that.
- In order for this system to work, it would need to be two-sided platform: health service providers would need an interface in order to accept & utilize patient information. When you go to a new physician or hospital, your intake into their system would be as simple as connecting your wallet & granting access. Whatever billionaire that ultimately develops this system would put in features to customize access, revoke it, etc.
- The interesting idea here is that current EHR systems wouldn’t be rendered obsolete. In fact, hospitals could probably keep their current EHR systems in place. What would change, however, is what can be done with this information after. In order for a hospital to port data from “decentralized EHR” into their records, they’d need a permission key from the patient.
Biggest Risks, Limitations, & Obstacles
Just like with any other analysis, I’d be an idealistic fool to not discuss all the risks and limitations with the pursuit of this idea. Here are some main issues that come to mind:
- Transfer of information from centralized record to patient — this is the biggest hurdle out of anything I’ll write about. The main thing that is unclear to me in this system is how we would be able to get access to patient’s medical records from these players in order to create their “decentralized” NFT health record. I believe this problem in & of itself will be an entire industry. Companies can offer services to get your records off EHR players & into your own decentralized record.
- Security — security is an issue with EHR records, no matter who houses them. But even bigger so, phishing and theft of EHR information is a big risk to account for in terms of the creation of this decentralized system. With all the benefits decentralization has to offer, it comes with downsides. Whereas before hospitals would bear this risk, patients would now be responsible for securing their health records. I believe it is one of the biggest barriers to mainstream adoption of blockchain & cryptocurrency in general. Hopefully more robust solutions will come to market in the future and make this less of an issue.
- Education — Picture a scenario where a patient accidentally revokes access to their record when a nurse is preparing a crucial medication or a patient loses their private security key to access their wallet. Many other scenarios like these will probably happen. This decentralized EHR may not happen with baby boomers, but it is crucial that Gen Z & other digital native generations ahead of us are brought up to be educated on this technology & well versed with using it in order to ensure its long term success and adoption.
- Government — the U.S. government could flat out ban this system, killing it at its core. Less likely, but still want to account for it. Especially since the U.S.’s attitude towards blockchain has been becoming increasingly more positive.
Final Thoughts & Conclusions
The system that I just described is a really tall order, and I recognize that. But I wouldn’t be writing about this if I didn’t believe it could be achieved. I got into medicine because I believe in healthcare. I think one of the greatest technological advances that our country produced was not the iPhone or our landing on the moon, but the Polio vaccine. In the span of 40 years, we’ve taken the HIV virus from a death sentence to a managable, once daily combination of viral protein inhibitors.
We’ve done amazing things with medicine, yet our technological adoption with healthcare delivery has been so slow. Patients deserve better, we deserve better. A seamless system as I describe above would be a proper step towards better health equity. We can empower patients to own their health information. We often see technological feats as impossible until they are not — it just takes the right team with the right vision to execute. Someone out there will address this problem and solve it in the correct way and one day this won’t seem like a pipe dream. To whoever decides to takes this on — I hope this offers a little bit of inspiration.
