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SSmithvi

Urgent: Privacy Concern

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SSmithvi    0

Hi, I was doing a search on the Internet, and I came across a lengthy conversation that I had with a Parkinson's specialist on your online Doctor's Forum with my photo.  I was shocked.  The forum has provided me with invaluable information related to my dad who has Parkinson's, but I was under the impression that information posted on the forum was restricted to the Parkinson's Web site which can only be accessed by members.  And, I had no idea that my photo was attached to my posts. This was obviously done automatically, because I did not attach a photo.  I just went to my setting and removed the photo.  My concern is, I gave a lot of details about my dad's private medical condition on the Forum and since my photo is attached anyone would be able to view this information.  It's very upsetting. Please get back to me as soon as possible to let me know if there is anyway you can remove this information from the Internet search engine. 

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swamper    59

I also found a post which I had written to Dr. Okun when googling a problem I was dealing with with my PD.  I did not think much about it at the time, but agree with daddysgirl that this could become a real problem.  I hope you can find a way to fix it.  

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christie    1,049

A quick solution to that would be to simply delete the posts including your dad's private information.
 
I must say however (for whatever it's worth!) that I disagree with restricted access to  the ask the doctor forum. The information provided there is valuable for everyone with PD, member or not, and should be freely available to everyone.

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maral77    69

When posting anything on the internet no matter where, it is never private. With the knowledge of how, anything posted is there for someone to access. There was a news item on one of our news channel a few weeks ago about this. 

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Island Woman    130

there was a segment on good morning amer. today about people looking up info. on webmd and mayoclinic and how their personal info was sold to other companies....one woman looked up heart attacks and her info was place on a list as a person with heart condition that she doesn't have...who know how far that info travels....to your employer....insurance co....scary

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siak    43

did you get any reply from the NPF people yet? I agree that this is disconcerting at the least! If you don't hear an answer soon, you might call the helpline and ask for someone to look into it. Many people on this forum have put personal contact info on because of their desire to help others and it is terrible that they may be making themselves vulnerable in their quest to help others. 

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SSmithvi    0

Yes, I spoke to the director of the technical team who was very nice and understanding.  She deleted the posts in question that was accompanied by my photo.  Apparently, if you have a blog your photo may appear automatically when you post something unless you go to your settings and remove it.  The director told me that it would take a couple of days to be deleted from the Internet search engines.  However, with my permission, she left the doctor's responses to my posts, because it was very useful information.  It would obviously have been better to see my questions to put the doctor's responses into context, but I had no choice because I didn't want my dad's personal information circulating on the Internet with my photo. 

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