4 ms·

From 4 years working leading teams in an electronic medical software shop, I urge consumers to not assume that vendors will be good stewards of personal data.

From 4 years working leading teams in an electronic medical software shop, I urge consumers to not assume that vendors will be good stewards of personal data. forget the boilerplate and assurance that data will only be used in an anonymous way. 1. Never admit to social drinking or smoking. It goes on your permanent record, even at just a mom and pop style clinic with paper records. 2. Above all, never admit to recreational use of marijuana. Maybe that's an obvious statement in some parts of the world, but living in Austin, it's eye-opening to see how minor drug use is something to be proud of. To preemptively address concerns about HIPAA laws, etc, being adequate protection and that this comment is pure paranoia, two things: 1. Snowden. Enough said. 2. I'm personally aware of a massive DB of client data solely given to the QA department for purposes of debugging a particularly nasty bug mysteriously vanishing from the lockdown where it was supposedly safely stored. There are insiders keenly aware of how profitable it is to acquire and sell medical data... In summary, you can no longer assume confidentially between health providers/monitors and patient interactions, to the detriment of all involved. EDIT: In order to provide some actionable information instead of just warnings: When I left the industry 6 years ago, it was still binding for a patient to explicitly say that certain information must be kept confidential and not shared with any party besides the physician handling the interaction. By all means, if you have experience with 10 years of using crank, it's highly relevant to provide that info to your HC provider. You just may want to get assurances that the information will be kept strictly confidential. Good luck -- the doctors and staff legitimately want to help; it's just the data miners that want to extract much profit from you as possible.

gurkendoktor 12y ago
I agree, if everything is stored in the iCloud. But the reason I love Apple's ecosystem is that you don't (yet) need the cloud for anything. TouchID works offline and even USB contact/calendar sync is coming back. I assume an iWatch would have a Lightning port to charge it, so why not sync it with your Mac running 10.10 at the same time? Is this wishful thinking in 2014?
- codyb 12y ago
  TouchID was never meant to be stored at the cloud level and is in fact isolated on the hardware side to prevent easy retrieval of the data. From Apple's page on Touch ID Security [1] "Secure Enclave Touch ID doesn't store any images of your fingerprint. It stores only a mathematical representation of your fingerprint. It isn't possible for your actual fingerprint image to be reverse-engineered from this mathematical representation. iPhone 5s also includes a new advanced security architecture called the Secure Enclave within the A7 chip, which was developed to protect passcode and fingerprint data. Fingerprint data is encrypted and protected with a key available only to the Secure Enclave. Fingerprint data is used only by the Secure Enclave to verify that your fingerprint matches the enrolled fingerprint data. The Secure Enclave is walled off from the rest of A7 and the rest of iOS. Therefore, your fingerprint data is never accessed by iOS or other apps, never stored on Apple servers, and never backed up to iCloud or anywhere else. Only Touch ID uses it, and it can't be used to match against other fingerprint databases." [1]http://support.apple.com/kb/HT5949?viewlocale=en_US&locale=en_US http://support.apple.com/kb/HT5949?viewlocale=en_US&locale=e...
  - cones688 12y ago
    Whose premise has been around for years but its called TPM... http://en.wikipedia.org/wiki/Trusted_Platform_Module http://en.wikipedia.org/wiki/Trusted_Platform_Module The "secure enclave" is nothing new at all.. its even more annoying they didn't just use the existing standard.
brymaster 12y ago
> From 4 years working leading teams in an electronic medical software shop, I urge consumers to not assume that vendors will be good stewards of personal data. forget the boilerplate and assurance that data will only be used in an anonymous way. Thanks. I'm concerned that practices are now using these custom Facebook-style portals for communicating between doctors-patients and viewing medical records and test results with even companion smartphone apps (https://www.healow.com/app.html https://www.healow.com/app.html). One called eClinicalWeb.com (https://www.google.com/search?q=eClinicalWeb.com https://www.google.com/search?q=eClinicalWeb.com) provided by a company called eClinicalWorks comes to mind that many now use. With no oversight and total disregard that people working in the social space have for user data and privacy, I'm terrified that these small medical software shops are just as negligent.
robg 12y ago
Sadly, this is the most cynical view, that while valid, I have no choice but to fight against to see medical progress. I also work in this area and after a decade as a publishing neuroscientist where we were bound by HIPAA rules and my universities were liable if there was a breach. I care greatly, and so my company does, about ensuring anonymity and learning from the data as much as possible, if participants continue to share. We assume anonymity before we touch one bit of data. And users always have the option of using our products without sharing anything at all.
- HeyLaughingBoy 12y ago
  To add another datapoint: I work for a large medical device manufacturer. We often need patient databases for debugging problems in the field. Although everyone who gets access to the raw data is HIPAA trained periodically (if your training expires, so do your data access credentials) we have implemented a "download database" feature that scrubs all patient identifying data before it's transmitted over the line. Sure, there may be some edge cases where we need that ID stuff (haven't come across it in the years we've been doing this), but the point is that we take patient confidentiality very seriously (and the business takes being dinged for a HIPAA violation just as seriously). It may sound fluffy and Pollyanna-like, but it's hard to be successful in this field without genuinely caring about the patient at the other end of your software.
- mcphilip 12y ago
  I absolutely agree with you. Medical progress depends on sharing information between service providers and those researches, etc that can produce actionable results from such data. I'm trying to give the (necessary) counterpoint: small scale stewards or medical data (often) tend to take an approach of handling patient data centered on cutting costs. Having worked in both the financial and medical industries, I can attest firsthand how there is a (frighteningly widespread) disregard for privacy information.
chimeracoder 12y ago
> To preemptively address concerns about HIPAA laws, etc, being adequate protection Broadly speaking, HIPAA does three things: 1. It ensures that you (as a patient) have some rights regarding accessing your own data and records. 2. It requires that entities who collect data on you ("covered entities") go through certain procedures when storing and sharing your data 3. It requires certain procedures if and when data is breached. It does not require covered entities to obtain consent before sharing your data with other companies[0]. It is often necessary to share data with outside entities in order to provide medical care[1]. All it does is mandate a certain legal structure around that sharing of data. In other words, your data is already being transmitted in ways that you likely aren't aware of. (Whether or not you view this as good/bad, necessary/superfluous is a matter of opinion, but there are a lot of misconceptions about what HIPAA actually does for patients). Less known is the more recent HITECH act[2], passed as part of the 2009 stimulus. It provides additional restrictions and regulations, but most of those are around the security of transportation and storage of patient data (and the penalties for noncompliance), not around patient consent. (Obligatory: I am not a lawyer, I am not your lawyer, and this is not legal advice. [0] https://en.wikipedia.org/wiki/Hipaa#Privacy_Rule https://en.wikipedia.org/wiki/Hipaa#Privacy_Rule [1] http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/businessassociates.html http://www.hhs.gov/ocr/privacy/hipaa/understanding/covereden... [2] https://en.wikipedia.org/wiki/Health_Information_Technology_for_Economic_and_Clinical_Health_Act https://en.wikipedia.org/wiki/Health_Information_Technology_...
- karmajunkie 12y ago
  While technically correct, I think you're glossing over the "legal structure around sharing" bit. In order to share data, there has to be a Business Associates Agreement in place (commonly referred to as a BAA for readers not in the industry.) one of the things that HITECH did was mandate that BA's are ALSO liable for data breaches in the same way covered entities are (provided data is breaches in their custody, of course). This means a BA has to maintain all of the same training and compliance requirements, including physical and logical security and auditing requirements.
  - chimeracoder 12y ago
ThomPete 12y ago
Although I hear you and think your concerns are 100% correct I refuse to believe it wont change. Personally I am hoping that we will see some sort of crypto-protocol which will embed medical documents into it to ensure control with where it is. It would require some lobbying to make these the only kind of valid documents but I believe things like that will be here before we know it.
specialist 12y ago
Agreed. I designed, implemented, and supported 5 regional health information exchanges. 80 hospitals, plus clinics, insurers, labs, scripts, etc. There is no privacy. HIPAA is inadequate. I've posted about this before. TL;DR: Until we have globally unique identifiers for all patients, their records cannot be encrypted and must be stored plaintext. Otherwise you won't be able to match patient identities (and their records) across systems.
- karmajunkie 12y ago
  I wouldn't call HIPAA inadequate. It's poorly specified. There's a great deal of fire-and-brimstone to the penalties for violating it, while leaving an enormously vague IDE of exactly what is going to garner a penalty. It has the effect of discouraging any kind of innovative movement in the space or requiring a great deal of capital investment to cover ones bases. Totally agree wrt to the global ids, however. That would solve a lot of problems with record location, but relys on patients using them. In general I don't think they're altogether politically tenable. [street cred: I've worked in medical off and on for fifteen years, and built one of the largest biosurveillance networks in the country. If you went to an ER in a city of any size in Texas, your (fully anonymized) data almost certainly passed through that database. I should note that this was for public health purposes, which are exempted from the BAA requirements under HIPAA.]

gurkendoktor 12y ago

I agree, if everything is stored in the iCloud. But the reason I love Apple's ecosystem is that you don't (yet) need the cloud for anything. TouchID works offline and even USB contact/calendar sync is coming back. I assume an iWatch would have a Lightning port to charge it, so why not sync it with your Mac running 10.10 at the same time? Is this wishful thinking in 2014?

codyb 12y ago
TouchID was never meant to be stored at the cloud level and is in fact isolated on the hardware side to prevent easy retrieval of the data. From Apple's page on Touch ID Security [1] "Secure Enclave Touch ID doesn't store any images of your fingerprint. It stores only a mathematical representation of your fingerprint. It isn't possible for your actual fingerprint image to be reverse-engineered from this mathematical representation. iPhone 5s also includes a new advanced security architecture called the Secure Enclave within the A7 chip, which was developed to protect passcode and fingerprint data. Fingerprint data is encrypted and protected with a key available only to the Secure Enclave. Fingerprint data is used only by the Secure Enclave to verify that your fingerprint matches the enrolled fingerprint data. The Secure Enclave is walled off from the rest of A7 and the rest of iOS. Therefore, your fingerprint data is never accessed by iOS or other apps, never stored on Apple servers, and never backed up to iCloud or anywhere else. Only Touch ID uses it, and it can't be used to match against other fingerprint databases." [1]http://support.apple.com/kb/HT5949?viewlocale=en_US&locale=en_US http://support.apple.com/kb/HT5949?viewlocale=en_US&locale=e...
- cones688 12y ago
  Whose premise has been around for years but its called TPM... http://en.wikipedia.org/wiki/Trusted_Platform_Module http://en.wikipedia.org/wiki/Trusted_Platform_Module The "secure enclave" is nothing new at all.. its even more annoying they didn't just use the existing standard.

brymaster 12y ago

> From 4 years working leading teams in an electronic medical software shop, I urge consumers to not assume that vendors will be good stewards of personal data. forget the boilerplate and assurance that data will only be used in an anonymous way. Thanks. I'm concerned that practices are now using these custom Facebook-style portals for communicating between doctors-patients and viewing medical records and test results with even companion smartphone apps (https://www.healow.com/app.html https://www.healow.com/app.html). One called eClinicalWeb.com (https://www.google.com/search?q=eClinicalWeb.com https://www.google.com/search?q=eClinicalWeb.com) provided by a company called eClinicalWorks comes to mind that many now use. With no oversight and total disregard that people working in the social space have for user data and privacy, I'm terrified that these small medical software shops are just as negligent.

robg 12y ago

Sadly, this is the most cynical view, that while valid, I have no choice but to fight against to see medical progress. I also work in this area and after a decade as a publishing neuroscientist where we were bound by HIPAA rules and my universities were liable if there was a breach. I care greatly, and so my company does, about ensuring anonymity and learning from the data as much as possible, if participants continue to share. We assume anonymity before we touch one bit of data. And users always have the option of using our products without sharing anything at all.

HeyLaughingBoy 12y ago
To add another datapoint: I work for a large medical device manufacturer. We often need patient databases for debugging problems in the field. Although everyone who gets access to the raw data is HIPAA trained periodically (if your training expires, so do your data access credentials) we have implemented a "download database" feature that scrubs all patient identifying data before it's transmitted over the line. Sure, there may be some edge cases where we need that ID stuff (haven't come across it in the years we've been doing this), but the point is that we take patient confidentiality very seriously (and the business takes being dinged for a HIPAA violation just as seriously). It may sound fluffy and Pollyanna-like, but it's hard to be successful in this field without genuinely caring about the patient at the other end of your software.
mcphilip 12y ago
I absolutely agree with you. Medical progress depends on sharing information between service providers and those researches, etc that can produce actionable results from such data. I'm trying to give the (necessary) counterpoint: small scale stewards or medical data (often) tend to take an approach of handling patient data centered on cutting costs. Having worked in both the financial and medical industries, I can attest firsthand how there is a (frighteningly widespread) disregard for privacy information.

chimeracoder 12y ago

> To preemptively address concerns about HIPAA laws, etc, being adequate protection Broadly speaking, HIPAA does three things: 1. It ensures that you (as a patient) have some rights regarding accessing your own data and records. 2. It requires that entities who collect data on you ("covered entities") go through certain procedures when storing and sharing your data 3. It requires certain procedures if and when data is breached. It does not require covered entities to obtain consent before sharing your data with other companies[0]. It is often necessary to share data with outside entities in order to provide medical care[1]. All it does is mandate a certain legal structure around that sharing of data. In other words, your data is already being transmitted in ways that you likely aren't aware of. (Whether or not you view this as good/bad, necessary/superfluous is a matter of opinion, but there are a lot of misconceptions about what HIPAA actually does for patients). Less known is the more recent HITECH act[2], passed as part of the 2009 stimulus. It provides additional restrictions and regulations, but most of those are around the security of transportation and storage of patient data (and the penalties for noncompliance), not around patient consent. (Obligatory: I am not a lawyer, I am not your lawyer, and this is not legal advice. [0] https://en.wikipedia.org/wiki/Hipaa#Privacy_Rule https://en.wikipedia.org/wiki/Hipaa#Privacy_Rule [1] http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/businessassociates.html http://www.hhs.gov/ocr/privacy/hipaa/understanding/covereden... [2] https://en.wikipedia.org/wiki/Health_Information_Technology_for_Economic_and_Clinical_Health_Act https://en.wikipedia.org/wiki/Health_Information_Technology_...

karmajunkie 12y ago
While technically correct, I think you're glossing over the "legal structure around sharing" bit. In order to share data, there has to be a Business Associates Agreement in place (commonly referred to as a BAA for readers not in the industry.) one of the things that HITECH did was mandate that BA's are ALSO liable for data breaches in the same way covered entities are (provided data is breaches in their custody, of course). This means a BA has to maintain all of the same training and compliance requirements, including physical and logical security and auditing requirements.
- chimeracoder 12y ago

ThomPete 12y ago

Although I hear you and think your concerns are 100% correct I refuse to believe it wont change. Personally I am hoping that we will see some sort of crypto-protocol which will embed medical documents into it to ensure control with where it is. It would require some lobbying to make these the only kind of valid documents but I believe things like that will be here before we know it.

specialist 12y ago

Agreed. I designed, implemented, and supported 5 regional health information exchanges. 80 hospitals, plus clinics, insurers, labs, scripts, etc. There is no privacy. HIPAA is inadequate. I've posted about this before. TL;DR: Until we have globally unique identifiers for all patients, their records cannot be encrypted and must be stored plaintext. Otherwise you won't be able to match patient identities (and their records) across systems.

karmajunkie 12y ago
I wouldn't call HIPAA inadequate. It's poorly specified. There's a great deal of fire-and-brimstone to the penalties for violating it, while leaving an enormously vague IDE of exactly what is going to garner a penalty. It has the effect of discouraging any kind of innovative movement in the space or requiring a great deal of capital investment to cover ones bases. Totally agree wrt to the global ids, however. That would solve a lot of problems with record location, but relys on patients using them. In general I don't think they're altogether politically tenable. [street cred: I've worked in medical off and on for fifteen years, and built one of the largest biosurveillance networks in the country. If you went to an ER in a city of any size in Texas, your (fully anonymized) data almost certainly passed through that database. I should note that this was for public health purposes, which are exempted from the BAA requirements under HIPAA.]