This is sad that websites like Patients Like Me are built for people to help other people through communication and knowledge and when you see members of a forum mining data and reselling and querying data to match and find identities it’s like a pack of thieves out there intruding. My rule of thumb for the internet is “what goes on the internet, stays on the internet” so be so very careful of what you put out there about yourself if you want to maintain any level of privacy and not have your information sold.
Sites as such have to run software to scan and look for people like this too on a regular basis so the members can collaborate and function among themselves without the rest of world looking in. PatientsLikeMe told all the user about the break in too which is good so nobody was kept in the closet, but again look at what company was n there mining, a well respected rating company that’s been around for years!
In the last couple of months, marketing has been a bit of a sore point around the Quack here as I find myself being a strange hybrid with having a coding background and over 20 years in sales and marketing myself, so analytically my brain automatically focuses on how I believe folks will use data and queries to market, some of it ok and some of it not ok. We all still want the opportunity to decide what we feel we want as public and what we want to keep somewhat private I think. Read on below about a company applying for a patent that will match your personal records and other information on the web to your email addresses, Twitter and so on. It’s a business and if used in the wrong ways, we get results we don’t like.
I often question this with healthcare information too with let’s say pharmacy benefit manager data, which does not fall under HIPAA and is bought and sold all the time about us, Ingenix and Milleman are 2 of the biggest miners out there and we all know the power of the algorithms that Ingenix sells in this area and in many other analytical areas, so does this stuff get matched and cross referenced? What’s going to stop a data firm from doing this – it’s a gray area. Would someone match all your prescription records let’s say to your Twitter handle? It could happen and you may not even be aware.
“HIPAA does not give the Department of Health and Human Services the ability to directly investigate or hold accountable entities, such as pharmacy benefit managers or companies such as Ingenix and Milliman, who are not covered by HIPAA.”
You can read the statement from Milliman about Intelliscript here.
“Does this process make it more difficult for consumers to get insurance?
No. There is nothing new about consumers authorizing the release of their medical records, including prescriptions, to insurers. This standard process has been in place for decades, helping insurers make good decisions about rates and insurability.”
You can read more about Ingenix MedPoint here.
There’s also a flash presentation where you can view the process here.
“By increasing understanding of potential disease conditions and relative risk, MedPoint enables underwriters to more accurately project future claims costs on a case-by-case basis.”
We come back to the programmers and coders paid to do such things usually at the instruction of others wanting the data. Nielsen decided it was a bad practice and said they were not doing this any longer, but again not doubting their word but only your programmer knows for sure. Remember this story below to where money was going to health insurance companies?
Have You Been Suckered In by FaceBook to Play Games To Support Employer and Insurance Company Reform Initiatives?
When you read on the member who was an automated bot after it was removed from the forum actually emailed and asked why they had been removed from the forum? That part was done by a human when the information trail disappeared.
Also keep in mind that PatientsLikeMe sells their data, but it is anonymized and when that fact was brought to the attention of members a number of them quit. You may or may not be aware of the coupons on Facebook, they can match buying habits and more. My advice, is to stay away from all the games and the other stuff on such sties that waste your time anyway. You can go online and get into online gaming without coupons and funny money.
Habits and Identities Revealed via Coupons – Facebook Fan Pages Can Make User ID Visible – Shopping Algorithms Reduce Privacy And Increase Visibility
If you don’t care, then it’s not an issue but remember everyone is out there mining something and it comes down to target marketing and advertising, and for goodness sakes be careful about putting anything out there an insurance company could use against you. One woman a while back had her disability income taken away over her postings on the web, so eyes are watching and some are mining the data. In honesty too, she was not using good sense either.
Data mining is just another series of algorithms out there functioning on the web to find data. Writing queries to match is not that hard once one finds a common denominator and again read below to where the one company wants a patent on their automated query system to match up your personal information with the likes of Twitter and Facebook. The company below mentioned called “Threat Tracker” is a service that pharmaceutical and other companies use to be alerted to when their company is being discussed in an unfavorable light and it reads blogs, Twitter and Facebook to find the comments for them, another big algorithm on the web. Be glad though if you participate in forums like PatientsLikeMe that they are aware of this potential problem and are on top of it and you might want to ask and inquire and get a question answered from other sites if they use any type of tracking software to detect this type of activity.
Don’t let the wrong algorithms hit you in the back on your way out the door as Algorithmic marketing has arrived. BD
At 1 a.m. on May 7, the website PatientsLikeMe.com noticed suspicious activity on its "Mood" discussion board. There, people exchange highly personal stories about their emotional disorders, ranging from bipolar disease to a desire to cut themselves.
It was a break-in. A new member of the site, using sophisticated software, was "scraping," or copying, every single message off PatientsLikeMe's private online forums.
California has a special protection for public officials, including politicians, sheriffs and district attorneys. It makes it easier for them to remove their home address and phone numbers from these databases, by filling out a special form stating they fear for their safety.
New York-based PeekYou LLC has applied for a patent for a method that, among other things, matches people's real names to the pseudonyms they use on blogs, Twitter and other social networks. PeekYou's people-search website offers records of about 250 million people, primarily in the U.S. and Canada.
The new unit, Nielsen BuzzMetrics, quickly became a leader in the field of social-media monitoring. It collects data from 130 million blogs, 8,000 message boards, Twitter and social networks. It sells services such as "ThreatTracker," which alerts a company if its brand is being discussed in a negative light. Clients include more than a dozen of the biggest pharmaceutical companies, according to the company's marketing material.