4 ms·

It'd be pretty interesting to see that kind of data, but it looks like this product violates my policy on not buying hardware that requires a cell phone app to

It'd be pretty interesting to see that kind of data, but it looks like this product violates my policy on not buying hardware that requires a cell phone app to use, and my policy on keeping as much of my medical information as far away from my mobile device as possible. I'm not sure exactly who the app itself sells/leaks the data being collected to, but even having that kind of data on the device would make me uncomfortable. A quick read of their privacy policy suggests that the mobile app is full of personalized ads and they use your data for "direct marketing" as well as "research". They offer your data to third parties for both "marketing" and "analytics" reasons. They'll send your data overseas whenever it suits them, even to places where your data will not have the same protections, and they'll keep the data they collect forever unless you submit a request for them to delete it and they are actually required to do so by law. Since I'm only mildly curious to see what the numbers would look like, I'm fine with waiting until someone puts one on the market that saves its data to storage that can later be copied over to an offline PC.

spc476 3y ago
My girlfriend as the Libre 3, and she has both the cell phone app, and a stand alone unit to store results. You can only use one or the other, not both at the same time (the Libre 3 uses Bluetooth). We have the stand alone unit because of insurance reasons.
- xen2xen1 3y ago
  Dexcoms also have small cell phone like devices you can use. I've never put a wifi password in I can recall.
mlsu 3y ago
They sell the data to nobody. It's considered PHI so covered by HIPAA. Dexcom has to trace custody of the data from the sensor to app to wherever it goes, so it is encrypted the whole way. Nobody has access unless the patient wants them to.
- autoexec 3y ago
  Their own privacy policy says they share data for marketing purposes. I don't think they'd do that without any compensation and their app includes personalized ads. HIPAA only covers "protected health information" and not all of the data collected by their products. They also state: "You can ask us not to use or share certain protected health information for treatment, payment, or our operations. We are not required to agree to your request" Once a year you can also request that they send you a report on who they shared your data with and why without paying them for it, but it will not include anything involving "treatment, payment, and health care operations, and certain other disclosures (such as any you asked us to make)." see https://www.dexcom.com/notice-of-privacy-practices https://www.dexcom.com/notice-of-privacy-practices
  - mlsu 3y ago
    I'm bet they probably do collect e.g. your phone's operating system and use that to figure out which market segment you belong to. But as far as I know Dexcom doesn't have any agreements with anyone to sell their user's data; If they have ads in the dex app I've never seen one. I would be extremely surprised if that were the case. >You can ask us not to use or share certain protected health information for treatment, payment, or our operations. We are not required to agree to your request What they're talking about here isn't necessarily what you expect. It's that, if you e.g. encounter a bug in the product that they need to disclose to the FDA, you cannot withhold information from them that would prevent them from doing that. Or, if they need to know what kind of diabetes you have so that they can charge your insurance for the correct prescription, you can't say "you're not allowed to share that." (doesn't really apply here, but that's kind of what's meant in that clause). You can see: treatment, payment, or operations. The scope of each of those is kept as small as possible, and they do have audits from time to time ensuring that it is. I assure you that CGM readings, trends, averages, reports, etc. ALL of that stuff is absolutely, positively considered PHI and considered extremely privileged. The only time anyone, even in the company, can see that data is if they are a customer support agent helping a specific customer, or if they are on the data science team looking at broad trends to help e.g. calibrate the product. >Once a year you can also request that they send you a report on who they shared your data with and why without paying them for it, but it will not include anything involving "treatment, payment, and health care operations, and certain other disclosures (such as any you asked us to make)." It's because they have extra requirements around storage, retention, etc of that PHI data. It's very likely that they can't send you a report because all parties have much stricter access controls on that data so it can't be aggregated and put in a report without filing a mountain of paperwork. I assure you, these companies do not fuck around with patient data. They don't even do things that give off the appearance of fucking around with patient data, because they know that if the HHS thinks that they are that's millions of dollars in audit costs.
bsilvereagle 3y ago
For the Freestyle Libre 3, you can use it without an account. That does not mean that Abbott is not still sending your readings to the cloud, but at least your name is not attached to it. It takes some work, but you can "liberate" your data from the app without the cloud account: https://frdmtoplay.com/freeing-glucose-data-from-the-freestyle-libre-3/ https://frdmtoplay.com/freeing-glucose-data-from-the-freesty...

spc476 3y ago

My girlfriend as the Libre 3, and she has both the cell phone app, and a stand alone unit to store results. You can only use one or the other, not both at the same time (the Libre 3 uses Bluetooth). We have the stand alone unit because of insurance reasons.

xen2xen1 3y ago
Dexcoms also have small cell phone like devices you can use. I've never put a wifi password in I can recall.

mlsu 3y ago

They sell the data to nobody. It's considered PHI so covered by HIPAA. Dexcom has to trace custody of the data from the sensor to app to wherever it goes, so it is encrypted the whole way. Nobody has access unless the patient wants them to.

autoexec 3y ago
Their own privacy policy says they share data for marketing purposes. I don't think they'd do that without any compensation and their app includes personalized ads. HIPAA only covers "protected health information" and not all of the data collected by their products. They also state: "You can ask us not to use or share certain protected health information for treatment, payment, or our operations. We are not required to agree to your request" Once a year you can also request that they send you a report on who they shared your data with and why without paying them for it, but it will not include anything involving "treatment, payment, and health care operations, and certain other disclosures (such as any you asked us to make)." see https://www.dexcom.com/notice-of-privacy-practices https://www.dexcom.com/notice-of-privacy-practices
- mlsu 3y ago
  I'm bet they probably do collect e.g. your phone's operating system and use that to figure out which market segment you belong to. But as far as I know Dexcom doesn't have any agreements with anyone to sell their user's data; If they have ads in the dex app I've never seen one. I would be extremely surprised if that were the case. >You can ask us not to use or share certain protected health information for treatment, payment, or our operations. We are not required to agree to your request What they're talking about here isn't necessarily what you expect. It's that, if you e.g. encounter a bug in the product that they need to disclose to the FDA, you cannot withhold information from them that would prevent them from doing that. Or, if they need to know what kind of diabetes you have so that they can charge your insurance for the correct prescription, you can't say "you're not allowed to share that." (doesn't really apply here, but that's kind of what's meant in that clause). You can see: treatment, payment, or operations. The scope of each of those is kept as small as possible, and they do have audits from time to time ensuring that it is. I assure you that CGM readings, trends, averages, reports, etc. ALL of that stuff is absolutely, positively considered PHI and considered extremely privileged. The only time anyone, even in the company, can see that data is if they are a customer support agent helping a specific customer, or if they are on the data science team looking at broad trends to help e.g. calibrate the product. >Once a year you can also request that they send you a report on who they shared your data with and why without paying them for it, but it will not include anything involving "treatment, payment, and health care operations, and certain other disclosures (such as any you asked us to make)." It's because they have extra requirements around storage, retention, etc of that PHI data. It's very likely that they can't send you a report because all parties have much stricter access controls on that data so it can't be aggregated and put in a report without filing a mountain of paperwork. I assure you, these companies do not fuck around with patient data. They don't even do things that give off the appearance of fucking around with patient data, because they know that if the HHS thinks that they are that's millions of dollars in audit costs.

bsilvereagle 3y ago

For the Freestyle Libre 3, you can use it without an account. That does not mean that Abbott is not still sending your readings to the cloud, but at least your name is not attached to it. It takes some work, but you can "liberate" your data from the app without the cloud account: https://frdmtoplay.com/freeing-glucose-data-from-the-freestyle-libre-3/ https://frdmtoplay.com/freeing-glucose-data-from-the-freesty...