TTA founder and former editor Steve Hards crawls out of his retirement tent to squint at the misty landscape of blockchain technology.
In a recent dream I was observing an auditorium full of people chanting “Blockchain! Blockchain! Blockchain!” and yes, mantra-like, blockchain is now popping up all the time in health technology articles and presentations.
It has taken a while to get to this stage. It was January 2016 when Editor-in-Chief Donna first mentioned blockchain. Since then there appears to have been more talk than action.
Where we have seen developments occurring is in the trickle of ‘coins’ or ‘tokens’ in health-related Initial Coin Offerings (ICOs) of dubious investment worthiness. I may rant about those in a follow-up article if anyone is interested. (Let me know in a comment.)
The terminology is still in its ‘shakedown phase’ (see this great terminology rant) and, because of the publicity around Bitcoin, which is on a blockchain, the distinction between blockchains and distributed ledger databases is blurred. There are technical differences: blockchains are a sub-set of distributed ledgers (Wikipedia), which is the term I’ll generally use in this article.
Distributed ledgers and EHRs
What are the implications of distributed ledgers for the biggest databases in healthcare, electronic health records (EHRs)?
The two principal characteristics that differentiate distributed ledgers from the databases with which we are familiar are that they are more robust and, potentially, more private. Some even claim to be quantum computing hack proof although we will have to wait for hackers with quantum computers to test that.
Traditional databases are formed from one large or several linked entities that have a centralised control from where performance, data integrity and security are monitored and managed. There are human and technological factors that introduce weaknesses to all such systems, as the number of data breaches reported here over the years testify.
However, data integrity is intrinsic to distributed ledgers because multiple copies of the database reside on servers in many places. They are networked together in such a way that they update each other with changes. Once a change in the data has been acknowledged (‘confirmed’ in the jargon) by a number of other databases in the network it is not possible to change the record in any of them. From a technical standpoint, as long as sufficient servers are available to host the distributed ledgers, central control is unnecessary. The systems are ‘decentralised’.
Dr. Christina Czeschik sums up the downside of current, centralised databases “…having a central intermediary means having a central vulnerability to outside threats, be it malware and other IT-related dangers, or real-life adversaries, human and otherwise (fire, water, earthquakes, et al.). Finally, the trustworthiness of a trusted intermediary may be disputed by some of the parties. This is a salient point in healthcare: There are few other industries in which so many different viewpoints and agendas need to be reconciliated [sic] to achieve a common goal”. Blockchains: A Cure For The E-Health Record Problem?
There is a good summary of the difference between blockchains and traditional databases here.
Roadblocks for EHRs?
Although the idea of having an EHR as a distributed ledger may be attractive from the robustness point of view, there are issues.
Crucially, to date, distributed ledgers have not had the efficiency of relational databases and so tend to store rather simple information but that is being tackled as developers work on relational distributed ledgers. Multiversum is a highly current example, having only just launched their funding drive. [This is not investment advice!]
To move an EHR into something like Multiversum the owners would have to weigh up the business case for mapping their current one to the new. (More on mapping issues below.)
The privacy issue
The decentralised nature of distributed ledgers means that a high level of privacy is built in. For example, 1M8JWYaELj4mB33E814bw1FtQSpEx2zxZN is an address on the Bitcoin blockchain but it is totally anonymous. Anonymous, that is, until I tell you that should you wish to support us this way, it is TTA’s Bitcoin address for donations. Even if you look at that address to see what’s there, there is no way for you to steal the contents, as only Donna has the private key that enables access. It’s like walking down a street: you see the address of a house and can guess at its contents but you cannot know who owns it without accessing another data source to which you may not have permission.
Here we run into the sticky problem of who owns the data in an EHR?
Is it the patients? Is it the healthcare organisation which is so dependent on being able to access the data?
In much the same way that as soon as you pay cash into a bank you no longer own it (you just trust the bank to give it back on request) your health data ceases to be yours as soon as the health professional adds it into their system. You may have the right to view that data and ask for it to be amended but you do not control it. You trust those that do control it to keep it confidential, to use it only for your benefit and to ask your permission to use it for some other purpose, such as research.
Not that patients always see it like that. The NHS in Suffolk, UK, recently started a publicity campaign asking people to allow their data to be shared between, for example, a hospital and the ambulance service, so that in an emergency the paramedics could give more appropriate treatment or not start treatment that could cause harm. It’s a perfectly sensible idea, especially as people in the UK probably assume that data is shared within the NHS ‘family’ anyway. But take a look at the early comments: there was immediate suspicion that the data would be sold to insurance companies or to the even more wicked “US tobacco industry”!
Embedded in the blockchain ‘movement’ is a deep distrust of all holders of large amounts of data, whether governmental or corporate, but particularly the banking industry. Its motto – if it were organised enough to have one – might well have been “Data Power to the People”. It is already easy to envision a future with ways of conducting fraud-free transactions in those areas where we currently employ trustworthy professionals as intermediaries to manage slow and sometimes faulty systems: banking; real estate; paying taxes; setting insurance contracts and making claims, and voting in elections. In that future we will use disintermediated trustless systems. As trust is redundant, ‘trustless’ is a positive term in this context.
But health data?
It is hard to see the privacy benefits of distributed ledgers changing the relationship between EHR owners/controllers and patients because the locus of interest in the data is with the organisations rather than the patients, who are primarily interested in their outcomes.
There is a great way of looking at the future of the control issue in this Kings Fund item.
Electronic data transfer between EHRs?
Distributed ledgers will do nothing directly for the big irritation for patients and healthcare providers, which is the incompatibility of electronic records when someone changes provider.
Electronic transfer still depends on mapping data tables and fields from one record to another. It can be done but there are huge headaches.
You cannot put three Xs into a database that takes only one X without putting the other two Xs into something else; encoding the three Xs into a single X somehow; dropping the extras, or dropping all three. Those are coding compromises that humans have to argue about and so mapping from one EHR to another is expensive for little or no ROI.
The mapping process could be jump-started by agreeing a standard for basic EHR structures and protocols for exchanging data structured that way between EHRs. This is the rationale for the US-based open standard for health data exchange, called Fast Healthcare Interoperability Resources (FHIR, pronounced ‘fire’). The project started in 2014 and, according to this Wikipedia article, produced its first standards for trial use in March 2017.
Even if it is successful in the US, I’m betting that FHIR will not be applied in other countries. It is not just a matter of translating field names. Structuring something as basic as patients’ names presents problems owing to the naming conventions of different cultures. It is an issue elegantly explored in this W3.org article: Personal names around the world.
Baby steps towards the future
One way that distributed ledger technology may help with the problem of communicating between EHRs is by providing a trustless – there’s that word again – intermediary based on standards such as a future generation of FHIR. A health worker enters a test result, say, in their EHR which sends it off to the distributed ledger intermediary. With the right permissions it can then be viewed in both the originating EHR and, if the patient is elsewhere on holiday, in a remote provider’s EHR if it too is linked to the intermediary.
This approach is being developed at MIT by John D. Halamka and team in a project called MedRec. See: The Potential for Blockchain to Transform Electronic Health Records and download their whitepaper for more detail.
And distributed ledger startup Health Wizz claims to have already cracked the problem using the FHIR protocol, allowing patients to access their medical records on their smartphone. That is until you read the final words on the resources page of their website “The Health Wizz mobile app…is extraordinarily close to providing that interoperability.” [my emphasis]
Estonia, that amazingly all-digital country where handwritten signatures are only required for marriages, and then only for sentimental reasons, claims that the health records of 95 percent of its population are in a blockchain EHR. But then, the country’s population is only 1.3 million and there is dispute as to whether blockchain is the right terminology to describe it.
Throughout history, new technologies (the wheel, railways, the internet, etc.) have taken off when they have provided efficient solutions to new problems and here is an emerging example that looks like it could take advantage of the privacy, integrity and monetary features of distributed ledgers. There is now a need for a large number of full human genomes for research but there is a shortage. Giving people control of access to their genome via a blockchain would enable them to licence access to that data for the research of their choosing. Being paid to licence it would incentivise more people to participate, thus increasing the availability data and improving the quality of the research. Read the plans of Harvard geneticist George Church on the subject here.
So, although it looks as if distributed ledgers/blockchain databases are not going to disrupt the EHR industry any time soon (on the ‘not broken, don’t fix’ principle), the provider that can be first to market with a substantial distributed ledger-based system to which established EHRs can interface and which improves on what’s available – and who can market it aggressively – should clean up. That’s actually a lot of ‘ifs’!
But a note of caution if you are thinking of plunging in. Distributed ledger technologies are not just in their infancy, they are still at a baby stage. Many are still gestating. It may be worth waiting to see which ones thrive. It could be an expensive mistake to build on a platform which is superseded in a year or two by others that are faster, more flexible and use less energy. They are being developed as you read.
This article is the opinion of TTA founder and Editor Emeritus Steve Hards and is not investment advice. Do you own research and take appropriate professional advice on any potential investment.