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I agree that it's a very difficult problem but I think it could be solvable if people actually sat down to solve it and could impose standards. At a minimum req

I agree that it's a very difficult problem but I think it could be solvable if people actually sat down to solve it and could impose standards. At a minimum require all systems to have an export function to a standard. 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.

nradov 8y ago
Every current EMR / EHR application can export data in standard formats. That's not a significant problem any more. The federal government has effectively already imposed standards compliance as a requirement. 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?
- dqv 8y ago
  >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.
  - nradov 8y ago
    You haven't answered the question of where the money will come from. Healthcare provider organizations are generally unwilling to pay such duty fees. HL7 FHIR is great but it does nothing to address the cost structure. This is a political and economic problem, not a technical problem.
    - tolien 8y ago
      I suppose the obvious answer is to require them to pay — as you say, it becomes a political problem for politicians to write law mandating it and the providers to lobby for it not to be forced. 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.
      - nradov 8y ago
        Large provider organizations are never going to totally surrender control of their patient data to some hypothetical government-sponsored monopoly. They may outsource some aspects to cloud platforms or SaaS vendors, and they may be persuaded to share data with other organizations for the right incentives, but we'll never see a major hospital or clinic totally give up control of data that's essential to their business. So your proposal wouldn't produce any cost savings; costs would actually go up.
        tolien 8y ago
        If the mandate (whether by regulatory or insurer/market force - we’ve established that the providers don’t want any kind of standardisation or data transfer, the hypothetical I’m proposing is that they’re dragged into doing it) is that they have to put their data into some data broker, if they want to keep their own copies too then the cost of doing that is their problem (or a calculation that the value outweighs the cost). 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.
- cmiles74 8y ago
  I would be interested to know more about which large hospital information systems can import and export data from their competitors. I understand that FHIR is planning to meet this need, but I don't see much information on which system implement it and which large healthcare systems are making use of it. 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.
  - nradov 8y ago
    Pretty much all large hospitals are now using systems which are technically capable of importing and exporting data in standard HL7 formats such as V2 messages, CDA, and/or FHIR. The trouble is in establishing the working interfaces between hospitals. They don't necessarily want to spend money building interfaces to share data with their competitors. FHIR implementations tend to be a little cheaper than older standards but the obstacles are still primarily political and economic rather than technical. Health information exchanges (HIEs) have helped in some areas by acting as centralized routing hubs so that every hospital doesn't have to build individual point-to-point connections with every other hospital. 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.
    - cmiles74 8y ago
      I think that is the critical point: there is no interface between hospitals. What little infrastructure the HITECH act sketched out on this point was vague and inadequate. Clinicians and patients are most concerned with communication between hospitals or healthcare companies; miscommunication on this level is the cause of real pain for real people and in many cases actual death. 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.)
- sangnoir 8y ago
  > 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? 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.
  - nradov 8y ago
    If anything law enforcement is even further behind than healthcare. The FBI tried to develop a comprehensive system for storing and sharing case data but it was a complete failure. https://en.wikipedia.org/wiki/Virtual_Case_File https://en.wikipedia.org/wiki/Virtual_Case_File
    - sangnoir 8y ago
      I wasn't comparing effectiveness - I was asking where the money comes from. As far as I know, pulling up stolen vehicle information doesn't stop at the county/city/state line. Also, after the first failure the FBI tried again with a bigger budget and better process and succeeded[1] 1. https://en.wikipedia.org/wiki/Sentinel_(FBI) https://en.wikipedia.org/wiki/Sentinel_(FBI)
  - lostlogin 8y ago
    Lotus notes (at least in Baltimore). There was a good thread on it here where this was viewed quite positively. https://news.ycombinator.com/item?id=17726094 https://news.ycombinator.com/item?id=17726094
- sz4kerto 8y ago
  This is what we're doing at Patients Know Best (https://www.patientsknowbest.com https://www.patientsknowbest.com) -- we are giving patients an aggregated view of their medical data and we're interfacing with many providers. As many of you mentioned, the major issue is to solve is the subtle, but important differences in vocabulary. Even if providers can export data in "standard formats", those standards are often not specific enough so you need to build something that can translate between them. 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.
  - lostlogin 8y ago
    HL7 is considered a standard format. If you spend a few minutes in that land you can end up very troubled, very fast, and it sounds like you know this. There people making big money off the format, just by converting flavour A to flavour B for big organisations. It’s grim.
    - organsnyder 8y ago
      I work for a software company in the HIE space. We like to say, "When you've seen one HL7 message, you've seen one HL7 message."

nradov 8y ago

Every current EMR / EHR application can export data in standard formats. That's not a significant problem any more. The federal government has effectively already imposed standards compliance as a requirement. 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?

dqv 8y ago
>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.
- nradov 8y ago
  You haven't answered the question of where the money will come from. Healthcare provider organizations are generally unwilling to pay such duty fees. HL7 FHIR is great but it does nothing to address the cost structure. This is a political and economic problem, not a technical problem.
  - tolien 8y ago
    I suppose the obvious answer is to require them to pay — as you say, it becomes a political problem for politicians to write law mandating it and the providers to lobby for it not to be forced. 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.
    - nradov 8y ago
      Large provider organizations are never going to totally surrender control of their patient data to some hypothetical government-sponsored monopoly. They may outsource some aspects to cloud platforms or SaaS vendors, and they may be persuaded to share data with other organizations for the right incentives, but we'll never see a major hospital or clinic totally give up control of data that's essential to their business. So your proposal wouldn't produce any cost savings; costs would actually go up.
      - tolien 8y ago
        If the mandate (whether by regulatory or insurer/market force - we’ve established that the providers don’t want any kind of standardisation or data transfer, the hypothetical I’m proposing is that they’re dragged into doing it) is that they have to put their data into some data broker, if they want to keep their own copies too then the cost of doing that is their problem (or a calculation that the value outweighs the cost). 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.
cmiles74 8y ago
I would be interested to know more about which large hospital information systems can import and export data from their competitors. I understand that FHIR is planning to meet this need, but I don't see much information on which system implement it and which large healthcare systems are making use of it. 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.
- nradov 8y ago
  Pretty much all large hospitals are now using systems which are technically capable of importing and exporting data in standard HL7 formats such as V2 messages, CDA, and/or FHIR. The trouble is in establishing the working interfaces between hospitals. They don't necessarily want to spend money building interfaces to share data with their competitors. FHIR implementations tend to be a little cheaper than older standards but the obstacles are still primarily political and economic rather than technical. Health information exchanges (HIEs) have helped in some areas by acting as centralized routing hubs so that every hospital doesn't have to build individual point-to-point connections with every other hospital. 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.
  - cmiles74 8y ago
    I think that is the critical point: there is no interface between hospitals. What little infrastructure the HITECH act sketched out on this point was vague and inadequate. Clinicians and patients are most concerned with communication between hospitals or healthcare companies; miscommunication on this level is the cause of real pain for real people and in many cases actual death. 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.)
sangnoir 8y ago
> 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? 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.
- nradov 8y ago
  If anything law enforcement is even further behind than healthcare. The FBI tried to develop a comprehensive system for storing and sharing case data but it was a complete failure. https://en.wikipedia.org/wiki/Virtual_Case_File https://en.wikipedia.org/wiki/Virtual_Case_File
  - sangnoir 8y ago
    I wasn't comparing effectiveness - I was asking where the money comes from. As far as I know, pulling up stolen vehicle information doesn't stop at the county/city/state line. Also, after the first failure the FBI tried again with a bigger budget and better process and succeeded[1] 1. https://en.wikipedia.org/wiki/Sentinel_(FBI) https://en.wikipedia.org/wiki/Sentinel_(FBI)
- lostlogin 8y ago
  Lotus notes (at least in Baltimore). There was a good thread on it here where this was viewed quite positively. https://news.ycombinator.com/item?id=17726094 https://news.ycombinator.com/item?id=17726094
sz4kerto 8y ago
This is what we're doing at Patients Know Best (https://www.patientsknowbest.com https://www.patientsknowbest.com) -- we are giving patients an aggregated view of their medical data and we're interfacing with many providers. As many of you mentioned, the major issue is to solve is the subtle, but important differences in vocabulary. Even if providers can export data in "standard formats", those standards are often not specific enough so you need to build something that can translate between them. 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.
- lostlogin 8y ago
  HL7 is considered a standard format. If you spend a few minutes in that land you can end up very troubled, very fast, and it sounds like you know this. There people making big money off the format, just by converting flavour A to flavour B for big organisations. It’s grim.
  - organsnyder 8y ago
    I work for a software company in the HIE space. We like to say, "When you've seen one HL7 message, you've seen one HL7 message."