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.
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.