Understood. Policies, however, can be quite meaningless. Does anyone really think that policies protect us ?
Yes, data privacy policies make a big difference. Take a look at countries in the EU. European laws force companies to have policies and associated procedures that result in significantly more data privacy that available from US-based companies.
Of course, I agree that not all companies follow their own policies, but when challenged in the courts, there is a bigger chance they will end up moving their practices closer to their promises.
Well said, and agreed. Thank you for your reply…
I don’t grant the Docs full, unlimited viewing rights to all my data because I DO kinda worry that could be used against me in some way.
But, in recent years, my Docs have lost the ability to see any of my records. I’ve lost interest in supplying data. I lost access to any Doc who could interpret the data anyway, so there just isn’t any data flow between us anymore. I might provide some paper records next time I go in, but often I am not able to schedule an apt to coincide with the time frame that I do that data collection/analysis, so there is simply no justification for going to a Doc appointment anymore…except to have them write the scripts.
I appreciate these thoughts and the general desire for more data privacy. I don’t use Clarity in part because I understand that in order to generate the pdf’s you share with your endo, you must upload all the G6 data to Dex through the Clarity app, which then gives them all the information that I’d like to restrict for non-medical purposes. Do I have that wrong?
flashback on this subject (July 2021):
@truenorth You are correct. I have made the personal choice to upload the CGM data to Dexcom. If I wasn’t okay with Dexcom having the data there are other options like getting the data from the Dexcom receiver, xdrip or a device with network access disabled while the G6 app is running.
The API mentioned in the thread you referenced requires the user to log in to Dexcom to provide access to that user’s data. The user can then revoke access any time. The documentation is here: Dexcom API
Vote for me when I run for president and when elected I’ll make the FDA change the rules.
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In today’s email from The Technocrat from MIT Technology Review
What I learned this week
Data brokers are selling mental-health data online, according to a new report from the Duke Cyber Policy Program. The researcher asked 37 data brokers for mental-health information, and 11 replied willingly. The report details how these select data brokers offered to sell information on depression, ADHD, and insomnia with little restriction. Some of the data was tied to people’s names and addresses.
In an interview with PBS, project lead Justin Sherman explained, “There are a range of companies who are not covered by the narrow health privacy regulations we have. And so they are free legally to collect and even share and sell this kind of health data, which enables a range of companies who can’t get at this normally—advertising firms, Big Pharma, even health insurance companies—to buy up this data and to do things like run ads, profile consumers, make determinations potentially about health plan pricing. And the data brokers enable these companies to get around health regulations.”
Today, the FTC announced a ban preventing the online mental health company BetterHelp from sharing people’s data with other companies.
Thank you for the update. I find this infuriating
I’m not sure why anyone would care about BG data being shared. Especially when it’s not attributed to an individual
I’m less disturbed by the idea the the data that Dexcom or Tandem can gather from my upload might be harvested and analyzed than the real possibility that their systems might not be able to protect my personal identification information like SSN, DOB, street and email addresses and phone number.
What truly bothers me is that my endo, who works for one of the largest medical organizations in Illinois, does not use the Tandem professional access that was set up for them. My profile says that my data isn’t being shared, whch means that they never trued to access it despite their demanding the password I used when I set up the account.
Instead each time I have a appointment they ask me to disconnect my pump so they may take it away, out of my sight and control, and connect it to a box that makes a b/w print copy. That copy never makes it into my medical records. It’s not shown as the basis for therapy recommendations. The statistics are barely looked at. Last time I brought in a copy from home in color and gave it to them. It’s like they’d never seen one before. I look at those reports online for weekly and monthly patterns and trends to see if I need to make changes, not to the pump but to my lifestyle.
I’m not sure that the endo knows how to interpret an AGP because of the irrational advice they made to reduce my basal by 5% across the board to “protect me from hypo” when l’ve no TBR, when using my profile, whether the pump is in auto mode or manual.
It might as well be a BGM log that was handwritten, because all that endo looks at is my A1C, which is worthless because of CKD.
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While watching this video, I was struck by the idea that privacy, or what is going on in our world regarding privacy, is like the tragedy of the commons, although it is not about personal gain.
The tragedy of the commons is a problem in economics that occurs when individuals neglect the well-being of society in the pursuit of personal gain . This leads to over-consumption and ultimately depletion of the common resource, to everybody’s detriment.
Since many individuals don’t care about privacy or tracking, we all wind up losing our privacy…
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The problem with deindentification of the data is that it is often false, and it possible the link the data back to an individual using other data sources. An example in a video I shared today, is that even when someone claims the identities have been removed, as with Netflix viewing habits, it is still possible to use other data sources to relink them, in this case IMDB reviews. As the researcher mentions, there are numerous companies that specialize in doing that kind of work.
Are you aware that you don’t have to use the SHARE APP to get your data to your endo. You game give them access to your Clarity App.
Thanks @John70 I know. It feels like the Clarity ap would be the same as Share really. My endo is really nice and when I was first asked years ago it probably would have been the easiest time to say I would rather supply a few weeks of data than to let them view it on the ap forever. But by the time you realize you don’t like someone looking at the months previous every time you have an appointment, it feels like it would be a slap in the face when she has only been nice and readily and promptly supplies me anything I have requested, and has gotten it okayed.
“anonymizing” is the snake oil of all companies that monetize - internally and/or externally - their client/customers’ data for their own benefit.
It can be hard with cgm data and your endo; they really hate that I don’t use clarity, they’ve mostly never heard of xDrip, they really want to be able to charge me the quarterly fee to “download” the clarity data and give it a 5-minute scan and lecture me about the lows that result from a new sensor settling in. This is my least favorite part of what is otherwise always a good, predictable, reproducible, regular endo discussion.
Marie20. What I found surprising about post is that Is that your Dr. was able to was able receive your data for extended time. I use share with my wife. If either of our wi-fi drops from where I am or she is. It goes off line and stays off till I reset it on my side.
@John70 It’s not the same share or clarity. The ap is designed for the Doctors use, they can go back for the 90/30/14 day data. It doesn’t show them completely everything we see because she can’t see comments or our alerts. And it is behind a few hours. But they can look at a lot of what we see under the Clarity ap.