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Seems absurd that if everything is digital now, we still have to fill out paper forms every time we visit a new doctor’s office, and it's difficult to get a dig

Seems absurd that if everything is digital now, we still have to fill out paper forms every time we visit a new doctor’s office, and it's difficult to get a digital copy of results. Inconsistent protection without much added convenience.

rsobers 14y ago
I have a similar feeling towards financial institutions. When you apply for a mortgage, you have to send your entire financial history, by mail (or perhaps worse, by email), to an underwriter. There's no indication as to what happens to all that sensitive stuff afterwards. It's a complete black box. I think there's a huge opportunity for some sort of app that gives the customer/patient visibility of their data during its entire lifecycle and gives them controls to revoke access, delete data, etc. (Kinda like I can revoke an OAuth token.)
- NittLion78 14y ago
  To be fair, re: the financial data, most institutions are required by SEC/FINRA to determine your net worth/assets at the time of application. So, to some degree, it makes sense you have to fill it out every time. There's no reason it has to be on paper, though...
  - rsobers 14y ago
    More to the point: what happens to that mound of sensitive data? Does it sit in a filing cabinet? If it's digital, does my underwriter forward it to her Gmail account so she can do the review on her couch?
    - DannyBee 14y ago
      Having just bought a house in the past month, i'm going to say that they fax it around 5 or 6 times, then they forward that to their gmail account. That way it looks like crap by the time it gets back to you.
- jtheory 14y ago
  That's what we're doing at PatientsKnowBest.com -- patient-centered medical records where the patient can decide who can see their records, and revoke access if they want. No one can revoke the patient's access. Putting the patient at the helm has a few wonderful effects -- among them: all of the red tape around transferring patient medical records from one doctor/institution to another pretty much disappears. They're all about making sure the patient's private data doesn't go to someone the patient wouldn't want to see it. The only reason they need all of those laws is because the patient isn't even in the loop, normally. We have the core webapp UI; we also have a REST/JSON API for letting apps (and third parties) work with the patient's data (if given permission, of course). It's a really interesting space to be in. (I'm sure reading the about raises lots of "but what about when" questions; we have answers ...mostly!) Edit: I should have said: that's what we're doing w/ medical records (not with financial data)
  - dataisfun 14y ago
    Rob, you beat me to the punch :)
  - rsobers 14y ago
    This is awesome. I love the idea (obviously, since I thought I invented it an hour ago ;-)!
  - eric-hu 14y ago
    You guys are providing a service I'm interested in. I checked out your website and, as an interested (American) patient, I could be further convinced if a couple of questions were answered: 1. Which doctors and insurance plans does PatientsKnowBest work with? 2. Where is my data stored? What happens if I decide to stop using PKB? I should add that I didn't want to spend the time to watch the 20 second videos, but perhaps I'm not the kind of customer you're trying to capture at the moment
- abgoldstein 14y ago
  Great point! A lot of people in the clinical world and health IT world completely agree with you. The real difficulty is opening the channel for secure communication between practices and hospitals, electronic health record vendors, and health information exchanges. Have you heard of RHEx (http://wiki.siframework.org/RHEx http://wiki.siframework.org/RHEx, https://github.com/project-rhex/simple_rhex https://github.com/project-rhex/simple_rhex)? It's an open source implementation of hData (http://www.projecthdata.org http://www.projecthdata.org) and provides a RESTful, secure way to transmit patient data.
youngerdryas 14y ago
Stealing data (it is not stealing I know) is much easier when the document is digital and this is exactly the kind of abuse that HIPPA is trying to address and is why you still have to use paper.
- yebyen 14y ago
  Just say stealing. Pedants say "stealing is to deprive a person of their property..." If you read the definition of stealing, it doesn't say deprive. It says take. You can't argue that nothing is being taken. It's ridiculous to pretend that either of records or intellectual property cannot be stolen. It's not easier to steal a person's records when the documents are digital. Especially if it's done properly (the storage, the privileges, the interchange...) What's easier in the digital case, that I will concede, is to steal the entire filing cabinet. It's easier to steal a piece of paper than to do either of these other things; breaking encryption to access the records once you've stolen the entire filing cabinet, or gaining unauthorized access on a system that is supposedly audited and access controlled.
  - youngerdryas 14y ago
    Well count pg as a pedant. http://www.paulgraham.com/property.html http://www.paulgraham.com/property.html
    - yebyen 14y ago
      It looks like he's arguing that ideas, art, and smells should be freely shared. He says that data moves like smells. The only thing is, there are laws that are meant to protect you from having your medical records smelled by arbitrary folks who shouldn't / snoops with no right to do it. I do not expect to have my medical records performed in a public setting by third parties, and I would not accept any amount as compensation in the form of royalties if they did. Those people should go to jail! I have no argument with Paul Graham's position on smells and data. There's a difference between a thing that is sold and published, and a thing that is shared under confidence. That is the whole idea of HIPAA and other data privacy laws. I am on the fence about copyright in general. That is not what's at issue here.
doomlaser 14y ago
The last time I went to a new doctor, I filled out all those forms on a touchscreen tablet they provided.
- jroll 14y ago
  May I ask what record system they were using? The tablet brand? How was the experience?
specialist 14y ago
There's historically been three hurdles to EHR adoption. Doctors make purchasing decisions. They're very conservative. Younger doctors embrace the computers. So it's just a matter of the old guard retiring. Who pays? A paper medical record is fine for a clinical practice. Electronic records are good for interchange. But that doesn't help the doctor or the hospital. The early adopter hospitals of our RHIO system were motivated by attracting their area doctors, so used our system as a loss leader to encourage admissions. EHRs suck. Huge. Imagine a whole universe of suckage and multiple it by infinite suckage. They're expensive, super complicated, and have no ROI. If it weren't for the federal push for electronic medical records, the carrot of block grants and "meaningful use" stick to punish non-participants, no one would adopt an EHR without a business case.

rsobers 14y ago

I have a similar feeling towards financial institutions. When you apply for a mortgage, you have to send your entire financial history, by mail (or perhaps worse, by email), to an underwriter. There's no indication as to what happens to all that sensitive stuff afterwards. It's a complete black box. I think there's a huge opportunity for some sort of app that gives the customer/patient visibility of their data during its entire lifecycle and gives them controls to revoke access, delete data, etc. (Kinda like I can revoke an OAuth token.)

NittLion78 14y ago
To be fair, re: the financial data, most institutions are required by SEC/FINRA to determine your net worth/assets at the time of application. So, to some degree, it makes sense you have to fill it out every time. There's no reason it has to be on paper, though...
- rsobers 14y ago
  More to the point: what happens to that mound of sensitive data? Does it sit in a filing cabinet? If it's digital, does my underwriter forward it to her Gmail account so she can do the review on her couch?
  - DannyBee 14y ago
    Having just bought a house in the past month, i'm going to say that they fax it around 5 or 6 times, then they forward that to their gmail account. That way it looks like crap by the time it gets back to you.
jtheory 14y ago
That's what we're doing at PatientsKnowBest.com -- patient-centered medical records where the patient can decide who can see their records, and revoke access if they want. No one can revoke the patient's access. Putting the patient at the helm has a few wonderful effects -- among them: all of the red tape around transferring patient medical records from one doctor/institution to another pretty much disappears. They're all about making sure the patient's private data doesn't go to someone the patient wouldn't want to see it. The only reason they need all of those laws is because the patient isn't even in the loop, normally. We have the core webapp UI; we also have a REST/JSON API for letting apps (and third parties) work with the patient's data (if given permission, of course). It's a really interesting space to be in. (I'm sure reading the about raises lots of "but what about when" questions; we have answers ...mostly!) Edit: I should have said: that's what we're doing w/ medical records (not with financial data)
- dataisfun 14y ago
  Rob, you beat me to the punch :)
- rsobers 14y ago
  This is awesome. I love the idea (obviously, since I thought I invented it an hour ago ;-)!
- eric-hu 14y ago
  You guys are providing a service I'm interested in. I checked out your website and, as an interested (American) patient, I could be further convinced if a couple of questions were answered: 1. Which doctors and insurance plans does PatientsKnowBest work with? 2. Where is my data stored? What happens if I decide to stop using PKB? I should add that I didn't want to spend the time to watch the 20 second videos, but perhaps I'm not the kind of customer you're trying to capture at the moment
abgoldstein 14y ago
Great point! A lot of people in the clinical world and health IT world completely agree with you. The real difficulty is opening the channel for secure communication between practices and hospitals, electronic health record vendors, and health information exchanges. Have you heard of RHEx (http://wiki.siframework.org/RHEx http://wiki.siframework.org/RHEx, https://github.com/project-rhex/simple_rhex https://github.com/project-rhex/simple_rhex)? It's an open source implementation of hData (http://www.projecthdata.org http://www.projecthdata.org) and provides a RESTful, secure way to transmit patient data.

youngerdryas 14y ago

Stealing data (it is not stealing I know) is much easier when the document is digital and this is exactly the kind of abuse that HIPPA is trying to address and is why you still have to use paper.

yebyen 14y ago
Just say stealing. Pedants say "stealing is to deprive a person of their property..." If you read the definition of stealing, it doesn't say deprive. It says take. You can't argue that nothing is being taken. It's ridiculous to pretend that either of records or intellectual property cannot be stolen. It's not easier to steal a person's records when the documents are digital. Especially if it's done properly (the storage, the privileges, the interchange...) What's easier in the digital case, that I will concede, is to steal the entire filing cabinet. It's easier to steal a piece of paper than to do either of these other things; breaking encryption to access the records once you've stolen the entire filing cabinet, or gaining unauthorized access on a system that is supposedly audited and access controlled.
- youngerdryas 14y ago
  Well count pg as a pedant. http://www.paulgraham.com/property.html http://www.paulgraham.com/property.html
  - yebyen 14y ago
    It looks like he's arguing that ideas, art, and smells should be freely shared. He says that data moves like smells. The only thing is, there are laws that are meant to protect you from having your medical records smelled by arbitrary folks who shouldn't / snoops with no right to do it. I do not expect to have my medical records performed in a public setting by third parties, and I would not accept any amount as compensation in the form of royalties if they did. Those people should go to jail! I have no argument with Paul Graham's position on smells and data. There's a difference between a thing that is sold and published, and a thing that is shared under confidence. That is the whole idea of HIPAA and other data privacy laws. I am on the fence about copyright in general. That is not what's at issue here.

doomlaser 14y ago

The last time I went to a new doctor, I filled out all those forms on a touchscreen tablet they provided.

jroll 14y ago
May I ask what record system they were using? The tablet brand? How was the experience?

specialist 14y ago

There's historically been three hurdles to EHR adoption. Doctors make purchasing decisions. They're very conservative. Younger doctors embrace the computers. So it's just a matter of the old guard retiring. Who pays? A paper medical record is fine for a clinical practice. Electronic records are good for interchange. But that doesn't help the doctor or the hospital. The early adopter hospitals of our RHIO system were motivated by attracting their area doctors, so used our system as a loss leader to encourage admissions. EHRs suck. Huge. Imagine a whole universe of suckage and multiple it by infinite suckage. They're expensive, super complicated, and have no ROI. If it weren't for the federal push for electronic medical records, the carrot of block grants and "meaningful use" stick to punish non-participants, no one would adopt an EHR without a business case.