Since I’ve been writing this blog, I’ve discussed the importance of Being an E Patient and Sharing Data. This past week, Congress took an action that will give many people with chronic conditions pause. All your private online data—the websites you visit, the content of your chats and emails, your health info, and your location—just became suddenly less secure. Not because of hackers, but because Congress just blocked crucial privacy regulations. This will allow your Internet service provider to collect all your data and sell that info to the highest bidder without asking you first. Welcome to a brave new world..... This doesn't just mean that sharing that information without your explicit permission will be fine and dandy. Since the rules were rolled back through the Congressional Review Act, the FCC is also barred from creating any "substantially similar" rules down the line. Popular Mechanics
The average consumer isn’t going to notice a whole lot of difference, because every site you visit is already sharing data in order to generate targeted ads. Pretty much anyone in the ad business-which is how most websites and the Internet in general are paid for-ends up using Google Analytics or some other basic tool.
The price of free Internet is advertisements, and that is ultimately what the companies are out to obtain. The good news is that an increasing amount of the activity online is encrypted, due to lots of advocacy. ... Increasingly, much of what you do is shielded from third parties because of encryption in place. The ISPs typically — in their efforts to use this data even before this (FCC) rule — have been providing consumers with ISP-level opt-outs. ... People should look for emails — typically they do push out an announcement when they roll out an ad-targeting program. NPR
That noted, once the data is gathered, how and who uses the data remains to be seen. While the FCC and FTC have historically protected privacy, with the new chairs and administration, this becomes a concerning question.
This is incredibly concerning for the public in general, but more so for those who wish to keep their health concerns private. There is no two ways about it, major advances in the treatment of chronic conditions are coming for people who are E-patients because they are sharing their data and participating in sites like Patients Like Me. But are their risks?
If you are an E Patient, be sure an read the security and privacy parts of the website. Patients Like Me has clear guidelines on what they collect and share and what they are doing to protect confidentiality.
Consider the following Opt Out Options:
Your ISP (Internet Service Provider): Time Warner/Spectrum customers can find their privacy dashboard here. Comcast customers can opt out of some targeted programs using these instructions. Verizon customers can find opt out options here. Remember, your phone company is technically an ISP too, so look up your options on that front as well.
Some smaller ISPs, which survive on small and satisfied customer bases as opposed to a large and captive audience, are more incentivized to protect your privacy with gusto. In fact, a whole host of small ISPs wrote a letter to Congress opposing this move. If you're lucky enough to have the option of switching to one, now might be a good time.
Triangle “i”: If you go to a website and there is a triangle “i” on your banner ad, that means that the company is tailoring ads based on your Web surfing and is offering you an opt-out. Keep in mind that while they wont be bothering you with advertisements, they’re probably still collecting data.
Mobile Devices: My iPhone lets you clear ad ID if you don’t want your apps to be tracked or work with their ad network partners. Apple lets you wipe that out. Google lets you reset it. Use of location, is also an opt-out.
Do-Not-Track: This appears in your browser and while only a small number of companies respect it. Choosing encrypted tools when you use email or make decisions about what sites and services (to use) — far less information about what you do during the day is going to be available.