Health information exchanges and payers (insurers) have been doing great work lately to facilitate authorized providers sharing data with each other using standard formats such as the formats published by HL7. So that does at least prevent the need for duplicate lab tests and reduce the risk of medication errors.
The problem I see is that a lot of the current players in the health system benefit from hidden data and duplicate procedures so it would take a lot of political courage to force them to open up.
The problem is that there is no organization which can provide a stable repository for every patient's data and build secure interfaces to thousands of different provider organizations. That's extremely expensive and there's no real business model. Where will the money come from?
It would be a cool idea if a non-profit organization could handle it. Healthcare organizations would pay a "duty fee" for requesting or sending records. We just need a standard for transporting it. FHIR makes it de facto HTTPS.
The closest analogy I can think of is the Data Communications Company that intermediates smart meter data in the UK between the energy suppliers and end users. As a monopoly, their prices are regulated (well or not is a political problem…) and all the providers have to use them.
If the data exchange was the source of truth, the providers would presumably save some money not having to store their own copies (or at least, could store more summarised versions) with all the requirements that HIPAA/GDPR entail.
However, there’s money to be had for a huge aggregated database of everyone’s health records, stored in consistent format for easy consumption…maybe we should be careful what we wish for.
In an ideal market, another player who didn’t want to hoard data could undercut them (not having that cost).
Tuning either the cost/benefit of outsourcing or the nature of the incentives, I suppose, are the key.
Putting the responsibility on the patients to transfer data strikes me as backwards. The vast majority of patients whose lives depend on the easy transfer of records from one organization to another are incapacitated. They have been hit by a car, suffered a stroke, or are moving from one facility to another.
Yes any initiative that relies on the patient to move data around is doomed to failure. Patients need to be able to get access to their data, but to deliver effective care the data has to flow between provider (and payer) organizations.
In terms of exporting data from one HIS system and into another, it's not clear to me that this will every work without more infrastructure. The exported HL7 data from one organization is going to be of little use to another, they would need some very specialized software to mediate between the data in the exported HL7 file and their own systems. Importing it directly into their hospital information systems is simply not going to be possible; their systems won't understand the myriad of idiosyncratic decisions that the other organization has made, often in response to the specific systems they have purchased (scheduling, laboratory, scheduling, etc.)
Other types of data are still problematic.
It’s all edges. It’s really grim. And once you have it sorted out, another variation pops up and fails in some new and awful way. Trying to maintain charts with columns and rows for example, basic stuff, in is near impossible. Just when you crack it you find some down stream system you have no control over is transposing rows and messing up records. It’s critical stuff and it’s a mess.
Even Epic doesn't have the ability to consolidate multiple CDA documents, or even write information directly to the chart. Each one requires manual review. Standards for exchange are not really the problem.
How does law enforcement organizations store and exchange case data? That's another area that is likely to be expensive with no real business model - granted, there is no health equivalent of the FBI - maybe there should be.
Also, after the first failure the FBI tried again with a bigger budget and better process and succeeded[1]
This is a though and fiddly problem, there's a reason why Google/MS/etc. have all bailed out. You can't just build something once and let it scale for the whole healthcare system.
As a technical matter, no one has yet demonstrated a blockchain that can scale to the amount of data and transaction volume required to maintain a patient chart for everyone in the country. Especially if we include images and genome sequences the data volume is in the exabyte order of magnitude.
This is fundamentally a political and economic problem. Throwing immature new technology at it won't solve anything.
Second, a blockchain creates a decentralized public ledger. Patients can be owners of their records, and sign to share access. There is already a working implementation of this technique in Filecoin.
Third, PoW is the 'new technology', a blockchain is just a data structure. e.g., Binary trees are no good for the U.S. healthcare system.
I know there are politics involved, but we are not politicians, why not try to solve the problem with the tools at hand?
Every company charges 10s of thousands of dollars for every "interface", which is one program sending something to another.
We've chimed in a few other parts of comments, but at PicnicHealth this is exactly what we're working on. If you're interested in fixing this problem we'd love to talk.
If something gets questioned, there is another copy somewhere.
Health Information Exchanges (HIEs) solve the problem to some extent by importing data from multiple provider organizations and synthesizing a single longitudinal record for every patient. But not every provider is part of an HIE, and no HIE really covers the whole country.
There are arguments against. Any text written is copyright of the writer, not the person it is written about. Why should the patient own the copyright of that text?
Data access is not the same thing as ownership. Additionally, this is not the case for other data held about someone. If you use a lawyer, they own (and don’t provide access to) the notes they make. Same for any other service provider.
And to avoid repeated tests, it means that this information must be shared between different healthcare organisations.
There is an argument against. Ownership implies the ability to do with the data as you wish, including removing certain parts or withholding others. This could lead to issues where a patients wants a test which is not indicated, and by providing edited records, clinicians may be misled. Similarly, would it be acceptable to delete information referring to a current HUV/Hep C or TB infection? And what about psychiatric patients? Sometimes patients lack insight into their condition, particular in psychosis and delusions. This can persist after acute episodes, where they deny they were unwell during the episode. These patients could then remove anything referring to this section, making future care much more difficult. Finally, medical records also refer to cases where there are legal issues. They may refer to suspicions of child abuse, or the expressed intent of a patient to go kill another. This information should not be blocked by difficulties with patients owning the data.
But the way it is pushed onto citizens is clearly wrong. Basically the doctor proposes you to switch to that system, citing the advantages, but not the disadvantages...
Also, with EHR, "ananymous data" doesn't mean much : your name is always on the papers produced by the doctors :-/ So anonymisation means : either remove identification data, or make sure it doesn't appear first hand. In both cases, in requires an action, and given the scale of the stuff, it won't be practical...