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Hey Blood Brothers, Big Brother is Spying on You!

Discussion in 'Rare Patient Voice' started by Anonymous, Feb 12, 2014 at 7:49 PM.

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  1. Anonymous

    Anonymous Guest

    There’s been a lot written lately about how technology is allowing pharmaceutical companies to invade our personal lives—we think we’ve bought an interesting health app or just signed up for a survey, and next thing we know we’re being tracked online and then bombarded with suitable communications.

    Take a look at this company, Rare Patient Voice, whose slogan is “Helping Patients with Rare Diseases Voice Their Opinions.” Their website states that: “In 2013, we established our Hemophilia/Bleeding Disorders panel, grew it to 290 panelists… and we’ll double the size of that in 2014.”

    What is really happening is that they are collecting personal and product use data to sell to third parties and pharmaceutical companies at their discretion, and employing the use of advanced cookies to track participants’ computer use, with the stated purpose of “identifying you as a suitable candidate for particular studies.”

    Check it out on their website rarepatientvoice.com. In the drop down menu under “Sign Up”, click on “How We Use Your Information”, and then click on the link to “Privacy Policy”.

    But don’t worry, if they come up with even more uses for your personal data, they will post that fact on their website.

  2. Anonymous

    Anonymous Guest

    I am Wes Michael, president of Rare Patient Voice. Let me correct a few things! We do not shar e your information with any company without your permission. Your answers to surveys or interviews are analyzed by research companies, without any identifying information. We collect patient contact information for only two reasons - to invite you to surveys, and to pay you when you have participated. Rather than pass on misinformation, feel free to contact me at 410-218-0527