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I think the ownership of medical records should be reversed. Right now the doctors behave as if they owned the records and the patient has to ask for them. Inst

I think the ownership of medical records should be reversed. Right now the doctors behave as if they owned the records and the patient has to ask for them. Instead the patient should be the owner of the records to which the doctor gets granted access as needed. All test results, X-rays and everything else should go into the patient's record and owned by the patient.

nradov 8y ago
That sounds great in theory. But how could we actually put it into practice? Who will build and maintain that personal health record system and where will the funding come from? Patients are generally unwilling to pay. Google, Microsoft, and Apple have tried to build PHRs to some extent but functionality and adoption have been limited. No one really trusts the government to maintain a big centralized repository of patient data. But decentralized systems are highly complex and prone to breakage. No one has really found a solution yet. 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.
- maxxxxx 8y ago
  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.
- hindsightRegret 8y ago
  The big tech/medical records companies will have to lead the charge here. Imagine that big tech sets the standard, and the hospitals who are abiding by the standard receive an "Apple Health Certified" stamp of approval. These certified hospitals have increased visibility within the curated marketplace and gain greater access to patients. This then naturally creates an incentive for hospitals to catch the standard, lest they be left behind. The tech companies are willing to put in the effort, it gives them access to a new marketplace.
- fpanettieri 8y ago
  Sounds exactly like a proper use case for a blockchain.
  - maxxxxx 8y ago
    In what way would blockchain solve the problems?
    - arsenico 8y ago
      I think, the idea is the distributed ledger, which allows you to store the information not with a centralised authority, but yourself. Blockchain would not necessarily be a good technological approach, but a distributed ledger, would be.
      - nradov 8y ago
        In general the healthcare system can't rely on patients to store their own data. Patients lose devices, forget their passwords, get hacked, etc. Certainly we should make it easier for patients to obtain copies of their medical records but it just isn't feasible to put the patient at the center of the data flow.
  - nradov 8y ago
    This is not a proper use case for blockchain. Blockchain technology is primarily for allowing transactions between parties that don't trust each other. That's not a problem we have in the US healthcare system. Providers are all known and generally licensed by the government. They adhere to strict rules of conduct, and if one of them breaks that trust they are subject to civil and criminal penalties. 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.
    - 8y ago
- dynofuz 8y ago
  we are working on it at https://1up.health https://1up.health which helps patients or developers aggregate and build on a consolidated medical record. We have a lot of developers making some really cool applications from those for patients with cancer to others helping individuals seeking life insurance with individuals connecting records from multiple health systems (we support 200+). Id love to hear from anyone else building applications in this space.
- brokenmachine 8y ago
  HL7 is an absolute shitshow. Every company charges 10s of thousands of dollars for every "interface", which is one program sending something to another.
MrEfficiency 8y ago
Why not have the clinic store a copy and the patient gets a carbon copy? If something gets questioned, there is another copy somewhere.
- nradov 8y ago
  Most large healthcare provider organizations already provide patients with online access to their records. Patients can download or print those records, but the problem is that it's still tough to integrate records from multiple different provider organizations in a clinically useful way. 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.
troyastorino 8y ago
Patients do have rights to the records, but as described, it's really hard to actually get them and keep them in a useful, accessible format. 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.
- maxxxxx 8y ago
  Sounds like you are trying something very ambitious!
Engineering-MD 8y ago
Why do you think they should be owned by patients? I’m not disagreeing with you, it might work but I would appreciate a more pursuasive argument. 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.
- tcbawo 8y ago
  Treating medicine as a generic, traditional business has done nothing positive for society. There has been a lack of innovation for fear of breaking things, but things are seeming more broken all the time. Maybe we'll start to see some traction.
  - Engineering-MD 8y ago
    I would agree with you, but you don’t really give an argument to say how the proposed alternative is better or the optimal solution.
    - tcbawo 8y ago
      I'm not advocating for patient ownership of medical records. I'm not in the field, so I don't know whether that makes sense. I do know that profit motives tend to backfire in this industry as everyone tries to get theirs before the house of cards comes falling down.
      - Engineering-MD 8y ago
        Fair response. I am in the UK, so it’s not profit orientated in any case. It is moving that way to a certain degree, but clinical decisions are based more on what’s good for the patient and in a defensive manner. The opposite effect is in place: reduce costs wherever possible (don’t do tests unless it will change management, don’t treat unless it will improve the patient’s life).
mariushn 8y ago
We tried that at http://www.juvmed.com http://www.juvmed.com , nobody cared
- austinjp 8y ago
  On what research are you basing your list of recommended periodic checkups?
  - mariushn 8y ago
    http://www.juvmed.com/science http://www.juvmed.com/science
- wiz21c 8y ago
  I certainly do care. Gov't in my country is pushing for an integrated EHR hat looks like yours (except the level of security is much higher 'cose the data are not anonymous), but the way those records are used is a bit shady. 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...

nradov 8y ago

That sounds great in theory. But how could we actually put it into practice? Who will build and maintain that personal health record system and where will the funding come from? Patients are generally unwilling to pay. Google, Microsoft, and Apple have tried to build PHRs to some extent but functionality and adoption have been limited. No one really trusts the government to maintain a big centralized repository of patient data. But decentralized systems are highly complex and prone to breakage. No one has really found a solution yet. 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.

maxxxxx 8y ago
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.
hindsightRegret 8y ago
The big tech/medical records companies will have to lead the charge here. Imagine that big tech sets the standard, and the hospitals who are abiding by the standard receive an "Apple Health Certified" stamp of approval. These certified hospitals have increased visibility within the curated marketplace and gain greater access to patients. This then naturally creates an incentive for hospitals to catch the standard, lest they be left behind. The tech companies are willing to put in the effort, it gives them access to a new marketplace.
fpanettieri 8y ago
Sounds exactly like a proper use case for a blockchain.
- maxxxxx 8y ago
  In what way would blockchain solve the problems?
  - arsenico 8y ago
    I think, the idea is the distributed ledger, which allows you to store the information not with a centralised authority, but yourself. Blockchain would not necessarily be a good technological approach, but a distributed ledger, would be.
    - nradov 8y ago
      In general the healthcare system can't rely on patients to store their own data. Patients lose devices, forget their passwords, get hacked, etc. Certainly we should make it easier for patients to obtain copies of their medical records but it just isn't feasible to put the patient at the center of the data flow.
- nradov 8y ago
  This is not a proper use case for blockchain. Blockchain technology is primarily for allowing transactions between parties that don't trust each other. That's not a problem we have in the US healthcare system. Providers are all known and generally licensed by the government. They adhere to strict rules of conduct, and if one of them breaks that trust they are subject to civil and criminal penalties. 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.
  - 8y ago
dynofuz 8y ago
we are working on it at https://1up.health https://1up.health which helps patients or developers aggregate and build on a consolidated medical record. We have a lot of developers making some really cool applications from those for patients with cancer to others helping individuals seeking life insurance with individuals connecting records from multiple health systems (we support 200+). Id love to hear from anyone else building applications in this space.
brokenmachine 8y ago
HL7 is an absolute shitshow. Every company charges 10s of thousands of dollars for every "interface", which is one program sending something to another.

MrEfficiency 8y ago

Why not have the clinic store a copy and the patient gets a carbon copy? If something gets questioned, there is another copy somewhere.

nradov 8y ago
Most large healthcare provider organizations already provide patients with online access to their records. Patients can download or print those records, but the problem is that it's still tough to integrate records from multiple different provider organizations in a clinically useful way. 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.

troyastorino 8y ago

Patients do have rights to the records, but as described, it's really hard to actually get them and keep them in a useful, accessible format. 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.

maxxxxx 8y ago
Sounds like you are trying something very ambitious!

Engineering-MD 8y ago

Why do you think they should be owned by patients? I’m not disagreeing with you, it might work but I would appreciate a more pursuasive argument. 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.

tcbawo 8y ago
Treating medicine as a generic, traditional business has done nothing positive for society. There has been a lack of innovation for fear of breaking things, but things are seeming more broken all the time. Maybe we'll start to see some traction.
- Engineering-MD 8y ago
  I would agree with you, but you don’t really give an argument to say how the proposed alternative is better or the optimal solution.
  - tcbawo 8y ago
    I'm not advocating for patient ownership of medical records. I'm not in the field, so I don't know whether that makes sense. I do know that profit motives tend to backfire in this industry as everyone tries to get theirs before the house of cards comes falling down.
    - Engineering-MD 8y ago
      Fair response. I am in the UK, so it’s not profit orientated in any case. It is moving that way to a certain degree, but clinical decisions are based more on what’s good for the patient and in a defensive manner. The opposite effect is in place: reduce costs wherever possible (don’t do tests unless it will change management, don’t treat unless it will improve the patient’s life).

mariushn 8y ago

We tried that at http://www.juvmed.com http://www.juvmed.com , nobody cared

austinjp 8y ago
On what research are you basing your list of recommended periodic checkups?
- mariushn 8y ago
  http://www.juvmed.com/science http://www.juvmed.com/science
wiz21c 8y ago
I certainly do care. Gov't in my country is pushing for an integrated EHR hat looks like yours (except the level of security is much higher 'cose the data are not anonymous), but the way those records are used is a bit shady. 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...