A presentation by Ben Royce on the challenges and rewards of moving EHR onto The Tangle (IOTA).
So how do we go about getting healthcare records onto the Tangle? As we build the Debut Protocol, we need to make an outline of concerns and vital concepts. This is a topic that can span dozens of jobs and years of manpower. "The journey of a thousand miles begins with one step" Lao Tzu reminds us. So let's take our first step.
The most applicable use case scenario here is HL7 messages, such as with readings from IoT telemedicine devices. This is a good place to start. As the scenarios for use grows either from a business perspective or adoption schedule, we can expand upon the message format. A doctor visit or hospitalization event for example can consist of diagnoses and tests bundled together.
HL7 is already a robust solution for capturing and bundling these healthcare events and the relevant data, and so we will adopt HL7 to the Tangle, via a protocol. The Debut Protocol.
The big difference here, as opposed to existing HL7 solutions, is that the Tangle is an open platform rather than a closed and tightly controlled database. Security and identity are where the landmines are: this must be implemented with the utmost care.
Who sees what, and how?
In what context is access granted to healthcare records? The truth is most people are not going to be interested or care about managing their healthcare records. Of course, they are the ultimate owners of their records, and this is why IOTA is so important. Because only with an open distributed ledger technology can people and healthcare organizations seamlessly and easily manage records. Without the data being trapped in proprietary silos difficult for individuals to access and port to other healthcare organizations, as their life progresses and they move around the world or the country.
"Hello Doctor New, I just moved to Dallas and I have diabetes and a number of healthcare events which are important for you to know about."
"We seem to be having trouble getting those records from your old doctor, I need to take an oral history..."
For the patient it is much better to simply have an app that is a dashboard to their entire lifetime of records, and they simply grant new access manually or as a matter of policy they explicitly or implicitly set. (This is, by the way, traditionally the vanguard of Health Information Exchanges, HIE. DLT is going to grow to become a huge player in HIE, since it is a such a natural fit for their area of concern.)
Alternatively, the patient doesn't have to manage or even care about their records. Access can be granted at the doctor's office with proof of identity, and the doctor can access those records once they have that patient's written or verbal authorization. The protocol should have a mechanism for alternative authorization without the patient involved for certain extraordinary scenarios. Scenarios include emergency rooms, they might be granted access without any authorization from the patient. Or perhaps relatives/ legal guardians should be able to grant access, as explicitly allowed by the patient, or by legal policy.
There may also be classes of records:
- Some healthcare records may be completely public. Perhaps a marathoner wants to voluntarily publish to the world their amazing resting heart rate.
- Some may be quasi-public. A patient may be automatically or voluntarily enrolled in public health databases for certain classes of record.s Severity and length of influenza infection studies, for example. Anonymously presumably.
- Another class of quasi-public record could be voluntary. They may also volunteer their data to medical studies, by the government or even private companies for a small fee (consider the financial transaction inherent in IOTA). Or maybe a large fee for certain rare and valuable classes of conditions, from certain companies, for certain reasons. A pharmaceutical company for example may put a bounty on certain conditions, and a patient may benefit from the study financially. Which us brings us to...
- The patient may make their records discoverable under certain conditions such that a company may contact the patient without knowing their identity, and the patient can choose to respond or not. (The default being undiscoverable.)
- Finally, some patients would like to manage their healthcare records in enough detail that they choose to hide some of their records completely. Even from their doctors. It's their life. Again, a healthcare record solution built on IOTA makes this granular control possible.
IOTA is a cryptocurrency coin with financial value attached to it. There is such a thing as zero-value IOTA transactions. But a very important decision has to be made here: should healthcare records have a fractional penny value, or no value? Or perhaps conditionally one or the other? Incentivization of record keeping suggests fractional penny values can speed adoption. At the same time, as values change, a perverse financial incentive may appear in healthcare records as well, so this area needs to be well-thought out for ethical reasons.
As a final note, there is an ICO craze in the world of cryptocurrency, tokenization is all the rage right now. It would be easy to market the Debut protocol as a new "coin" or token but it is not a coin or token per se. It is a protocol. Not really a platform (yet).
For assembling healthcare records onto the Tangle.