6 ms·

> Personally, on ethical grounds, I could never have designed a system like that, with so little regard for others, externalising private information so that a

> Personally, on ethical grounds, I could never have designed a system like that, with so little regard for others, externalising private information so that a permanent record is kept. My bread'n'butter is patient systems. I cannot think of a way to say this that is not patronising or condescending on some level. Your suggestion will not work. At all. On any level. If we implemented a system like this people would die. Hospitals and Doctors would be sued to oblivion, and rightfully so, but only if they don't succumb to bankruptcy due to malfeasance and incompetence first. Ethically building a patient administration system requires that you collect relevant information, that is patient-centric, and that identifies fully the patient, their needs, their location and their past episodes of care. > At this point, if you care about your privacy, you really only have the option of not engaging with the system. Or engaging as little as possible. The spectrum between privacy and effectiveness with patient and clinical systems is simple and stark. If you want absolute privacy you will receive care that will be truncated, untailored, unfit and unlinked.

Aerroon 6y ago
So, what you're effectively saying is that if you want to have privacy you can't get medical care?
- viraptor 6y ago
  You can't get medical care efficiently and accounting for your specific situation. Sure, you can have a limb set after a mild injury without extra information. But anything long term or needing specific management will get complicated.
  - Aerroon 6y ago
    But we had medical care in the past that somehow worked without all of these digital systems? Was that care significantly less effective because of no digital data? It was less efficient, because you had to carry your documents around yourself, but I'm not sure that the care was significantly less effective. I'm sure that it makes a difference to some people, but so does the vulnerability of privacy. How many people will simply not see a doctor because they're worried about this?
    - monkeydreams 6y ago
      > It was less efficient, because you had to carry your documents around yourself, but I'm not sure that the care was significantly less effective. Also your healthcare providers kept their fully-identified records. And, yes, it was signficantly less effective with higher error rates, etc. > How many people will simply not see a doctor because they're worried about this? Very few, I suspect. None that I have ever heard of outside of people with significant anxiety disorders (this is literally true, and not my implying anything).
      - Aerroon 6y ago
        I don't mean that they will never see a doctor. What I mean is that when something is embarrassing they won't see a doctor, particularly when it comes to mental health.
- monkeydreams 6y ago
  No, what I am saying is that if you want complete privacy you can't have effective care. Effective care requires knowledge of patient history, co-ordination between providers, etc. Your general practitioner needs to identify you to a downstream specialist using a strong-identifiable source. Your hospital requires knowledge of your allergies, of your heritage, of your past medical history, etc, in order to ensure you receive the best therapies and medicines. This does not even touch of things such as funding models or holistic healthcare plans. The best any care provider would be able to do, in lieu of a trustworthy patient data source, is to offer general medicines and stabilisation.
  - temp667 6y ago
    I was on the back-end of a large electronic health records implementation. I'm not actually sure better care resulted, and the security was that dystopian type, ridiculous and insecure at the same time (we had to downgrade some systems to connect). At least in this mental health practice, you charted on paper / locally to the providers systems. We had a billing team (in old model) that only uploaded key patient info (MRN / DOB / Service date / time / billing code) to a billing system. This was done using billing slips that went to someone trained on it (who could handle all the weird hassles around eligibility etc etc). Provider would actually talk to patients etc etc. The notes were pretty focused afterwards. And yes - pretty secure - it was actually hard to just browse around - providers locked up their notes in their office, and their office was locked (we had a three lock rule -> front door with alarm (metal gate), office locked, file drawer locked. What people don't tell you is with the electronic health record, they also required that all these required elements be "charted" - on EVERY visit. So in new system pretty soon charts become a pages of boilerplate per visit - copy and paste stuff. It was not useful anymore to do a case history from this chart. So we made the admin folks happy, but what a trash experience - the EHR folks are selling bills of goods and the admin folks implementing and the compliance folks mandating endless boilerplate and macro entries to get anything approved are wasting all our time and money. I got out, never felt better - the people were great, the ordered from on high decade old java app through a double VPN that worked 50% of the time with no user experience thinking - a nightmare. And in this new system, every sysadmin could basically snoop on anyone (all in the name of patient coordination) as could lots of others who just ended up with the extra permissions because the system was so locked down we all basically had to be superusers. To run billing reports you needed access to every record - so they had to give you these ridiculous permission levels. And to avoid QC issues billing staff are reading all the chart notes to make sure all the required boilerplate is in them. Such BS. This system was integrated with a lot of providers, so you could also see everything related to that person everywhere (all the office / admin / billing staff at literally every provider included). While a bit helpful if you had a billing issue (same unit type billed at an unapproved frequency) all the benefits focused on that type stuff (admin ease) and privacy was zero across that backend system.
feralimal 6y ago
I appreciate your being honest about how the system works, and that part of its function is to aggregate data. I don't think the system can work in the ideal way I would like - the system's priority is the system itself, regardless of the wishes of the individual. As you say, doctors would be sued. I would say that suing, etc relates to the culture that has grown up around the system. And perhaps the medical system was always this way - ie system-centric, rather than patient-centric. With the onset of the 'IT age', we get to see that system-centric fruit fully 'ripen' such that everyone's data can be seen by anyone. You might say - as I do - that it is for the person who is being treated to be the collector of their information. A different culture would have grown had we had the patient at the center of our considerations. I'm sure people have been warning all the way down the line, about the issues over privacy. It is frustrating that at every turn the expediency over the system overrides all other concerns. After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all. I would go further and say that this outcome is by design, as those running the system - those who govern us - would prefer that we were ignorant while they are informed. Its pretty dystopian anyway.
- monkeydreams 6y ago
  > After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all. I'd argue this, but I recognise I am in a privileged position of knowing how the systems work. HIPAA (in the US) and similar legislation in other countries actually puts a lot of power in the hands of patients - if they know how to use it. You are never going to be in the situation where the patient controls their data completely (what happens if they are non-responsive, drunk or psychotic and unable to legally consent to an intervention they desperately want). I think we shall move towards access to data, and possibly interpretation of that data, but not ownership. Control of the data will always come with caveats, as the body paying for the treatment will always assert their right to how the data is transmitted to minimise costs.
manquer 6y ago
this is a strawman argument. Ppl will likely die because of this leak, I don't think there was any informed decision weighing the risks of both approaches before making the choice. Every year I see leak after leak in medical data, I am only an developer not in the industry, but the nature of the leak has always indicated massive incompetentence and poor design or ops, rather than than real need for patience care. Storing data in public S3 bucket has nothing to do with patient care, unwilling to invest to upgrade from windows XP has nothing to do with abiltiy to give care. Ransomware attacks because of aging stack has nought to do with privacy or care. There is very very little need to aggregate data given the risk of leaks, and very little value to any single patient when his data gets aggregatated. A system not influenced by pharma or software industry would make it incredibly expensive or hard to collect aggregate data, while keeping individual records usuable The harsh reality is hospital administration and regulation tends to be skewed with doctors, it is the same with legislators who tend to be lawyers, or professional management tend to be sales than tech. None of these groups understand the nuances of tech always to manage or regulate them better, sometimes they are smart or trust their advisors and get it right, but it hit and miss. Data is money today , so industry is not interested in better safety of medical data either, preventing aggregate collection will loose a lot of value for med tech companies.
- monkeydreams 6y ago
  > this is a strawman argument. I'm reading this as a header declaration. You are arguing a range of items without actually touching on my point - that health data patterns require a link from encounter and observations back to a patient record. I think that you are arguing a number of these points with incomplete information (i.e. that you have little understanding of the pressures which result in the continued existence of Windows XP within the health ecosystem), and on other points you are completely missing the point (storing patient data on the cloud is a whole different argument). > Data is money today , so industry is not interested in better safety of medical data either, preventing aggregate collection will loose a lot of value for med tech companies. The data has relatively minimal value for the makers of patient record systems. The value of these systems are in the licensing and ancillary/secondary services.
jancsika 6y ago
> If you want absolute privacy you will receive care that will be truncated, untailored, unfit and unlinked. Are you sure your expertise in this area is up to date? Even with "unlinked": Signal can do discovery without the server storing a social graph. There's nothing stored on a server for a hacker to ransom. Rank speculation, but I'd imagine there are current designs even at Apple that protect user's health data, and those designs contradict your claim of a shrug-while-we-work dichotomy between "privacy and effectiveness." Edit: clarification, added a barb :)
- monkeydreams 6y ago
  > Are you sure your expertise in this area is up to date? It's a constantly changing field, but Health data systems are not the fastest changing field. Change is bound to lower pace layers (governance, usually) and so the capabilities of these systems are ground slowly but incredibly fine. > Rank speculation, but I'd imagine there are current designs even at Apple that protect user's health data, and those designs contradict your claim of a shrug-while-we-work dichotomy between "privacy and effectiveness." Cool. I always enjoy new ideas for how to do things. If you can solve these issues, you would upend a HUUUUUGE industry overnight and would be richer than Bezos.

Aerroon 6y ago

So, what you're effectively saying is that if you want to have privacy you can't get medical care?

viraptor 6y ago
You can't get medical care efficiently and accounting for your specific situation. Sure, you can have a limb set after a mild injury without extra information. But anything long term or needing specific management will get complicated.
- Aerroon 6y ago
  But we had medical care in the past that somehow worked without all of these digital systems? Was that care significantly less effective because of no digital data? It was less efficient, because you had to carry your documents around yourself, but I'm not sure that the care was significantly less effective. I'm sure that it makes a difference to some people, but so does the vulnerability of privacy. How many people will simply not see a doctor because they're worried about this?
  - monkeydreams 6y ago
    > It was less efficient, because you had to carry your documents around yourself, but I'm not sure that the care was significantly less effective. Also your healthcare providers kept their fully-identified records. And, yes, it was signficantly less effective with higher error rates, etc. > How many people will simply not see a doctor because they're worried about this? Very few, I suspect. None that I have ever heard of outside of people with significant anxiety disorders (this is literally true, and not my implying anything).
    - Aerroon 6y ago
      I don't mean that they will never see a doctor. What I mean is that when something is embarrassing they won't see a doctor, particularly when it comes to mental health.
monkeydreams 6y ago
No, what I am saying is that if you want complete privacy you can't have effective care. Effective care requires knowledge of patient history, co-ordination between providers, etc. Your general practitioner needs to identify you to a downstream specialist using a strong-identifiable source. Your hospital requires knowledge of your allergies, of your heritage, of your past medical history, etc, in order to ensure you receive the best therapies and medicines. This does not even touch of things such as funding models or holistic healthcare plans. The best any care provider would be able to do, in lieu of a trustworthy patient data source, is to offer general medicines and stabilisation.
- temp667 6y ago
  I was on the back-end of a large electronic health records implementation. I'm not actually sure better care resulted, and the security was that dystopian type, ridiculous and insecure at the same time (we had to downgrade some systems to connect). At least in this mental health practice, you charted on paper / locally to the providers systems. We had a billing team (in old model) that only uploaded key patient info (MRN / DOB / Service date / time / billing code) to a billing system. This was done using billing slips that went to someone trained on it (who could handle all the weird hassles around eligibility etc etc). Provider would actually talk to patients etc etc. The notes were pretty focused afterwards. And yes - pretty secure - it was actually hard to just browse around - providers locked up their notes in their office, and their office was locked (we had a three lock rule -> front door with alarm (metal gate), office locked, file drawer locked. What people don't tell you is with the electronic health record, they also required that all these required elements be "charted" - on EVERY visit. So in new system pretty soon charts become a pages of boilerplate per visit - copy and paste stuff. It was not useful anymore to do a case history from this chart. So we made the admin folks happy, but what a trash experience - the EHR folks are selling bills of goods and the admin folks implementing and the compliance folks mandating endless boilerplate and macro entries to get anything approved are wasting all our time and money. I got out, never felt better - the people were great, the ordered from on high decade old java app through a double VPN that worked 50% of the time with no user experience thinking - a nightmare. And in this new system, every sysadmin could basically snoop on anyone (all in the name of patient coordination) as could lots of others who just ended up with the extra permissions because the system was so locked down we all basically had to be superusers. To run billing reports you needed access to every record - so they had to give you these ridiculous permission levels. And to avoid QC issues billing staff are reading all the chart notes to make sure all the required boilerplate is in them. Such BS. This system was integrated with a lot of providers, so you could also see everything related to that person everywhere (all the office / admin / billing staff at literally every provider included). While a bit helpful if you had a billing issue (same unit type billed at an unapproved frequency) all the benefits focused on that type stuff (admin ease) and privacy was zero across that backend system.

feralimal 6y ago

I appreciate your being honest about how the system works, and that part of its function is to aggregate data. I don't think the system can work in the ideal way I would like - the system's priority is the system itself, regardless of the wishes of the individual. As you say, doctors would be sued. I would say that suing, etc relates to the culture that has grown up around the system. And perhaps the medical system was always this way - ie system-centric, rather than patient-centric. With the onset of the 'IT age', we get to see that system-centric fruit fully 'ripen' such that everyone's data can be seen by anyone. You might say - as I do - that it is for the person who is being treated to be the collector of their information. A different culture would have grown had we had the patient at the center of our considerations. I'm sure people have been warning all the way down the line, about the issues over privacy. It is frustrating that at every turn the expediency over the system overrides all other concerns. After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all. I would go further and say that this outcome is by design, as those running the system - those who govern us - would prefer that we were ignorant while they are informed. Its pretty dystopian anyway.

monkeydreams 6y ago
> After, what 100 years(?) we find ourselves where we are no, with the patient having no control (and often no knowledge) of the issues that relate to them, while the system has it all. I'd argue this, but I recognise I am in a privileged position of knowing how the systems work. HIPAA (in the US) and similar legislation in other countries actually puts a lot of power in the hands of patients - if they know how to use it. You are never going to be in the situation where the patient controls their data completely (what happens if they are non-responsive, drunk or psychotic and unable to legally consent to an intervention they desperately want). I think we shall move towards access to data, and possibly interpretation of that data, but not ownership. Control of the data will always come with caveats, as the body paying for the treatment will always assert their right to how the data is transmitted to minimise costs.

manquer 6y ago

this is a strawman argument. Ppl will likely die because of this leak, I don't think there was any informed decision weighing the risks of both approaches before making the choice. Every year I see leak after leak in medical data, I am only an developer not in the industry, but the nature of the leak has always indicated massive incompetentence and poor design or ops, rather than than real need for patience care. Storing data in public S3 bucket has nothing to do with patient care, unwilling to invest to upgrade from windows XP has nothing to do with abiltiy to give care. Ransomware attacks because of aging stack has nought to do with privacy or care. There is very very little need to aggregate data given the risk of leaks, and very little value to any single patient when his data gets aggregatated. A system not influenced by pharma or software industry would make it incredibly expensive or hard to collect aggregate data, while keeping individual records usuable The harsh reality is hospital administration and regulation tends to be skewed with doctors, it is the same with legislators who tend to be lawyers, or professional management tend to be sales than tech. None of these groups understand the nuances of tech always to manage or regulate them better, sometimes they are smart or trust their advisors and get it right, but it hit and miss. Data is money today , so industry is not interested in better safety of medical data either, preventing aggregate collection will loose a lot of value for med tech companies.

monkeydreams 6y ago
> this is a strawman argument. I'm reading this as a header declaration. You are arguing a range of items without actually touching on my point - that health data patterns require a link from encounter and observations back to a patient record. I think that you are arguing a number of these points with incomplete information (i.e. that you have little understanding of the pressures which result in the continued existence of Windows XP within the health ecosystem), and on other points you are completely missing the point (storing patient data on the cloud is a whole different argument). > Data is money today , so industry is not interested in better safety of medical data either, preventing aggregate collection will loose a lot of value for med tech companies. The data has relatively minimal value for the makers of patient record systems. The value of these systems are in the licensing and ancillary/secondary services.

jancsika 6y ago

> If you want absolute privacy you will receive care that will be truncated, untailored, unfit and unlinked. Are you sure your expertise in this area is up to date? Even with "unlinked": Signal can do discovery without the server storing a social graph. There's nothing stored on a server for a hacker to ransom. Rank speculation, but I'd imagine there are current designs even at Apple that protect user's health data, and those designs contradict your claim of a shrug-while-we-work dichotomy between "privacy and effectiveness." Edit: clarification, added a barb :)

monkeydreams 6y ago
> Are you sure your expertise in this area is up to date? It's a constantly changing field, but Health data systems are not the fastest changing field. Change is bound to lower pace layers (governance, usually) and so the capabilities of these systems are ground slowly but incredibly fine. > Rank speculation, but I'd imagine there are current designs even at Apple that protect user's health data, and those designs contradict your claim of a shrug-while-we-work dichotomy between "privacy and effectiveness." Cool. I always enjoy new ideas for how to do things. If you can solve these issues, you would upend a HUUUUUGE industry overnight and would be richer than Bezos.