A new social networking site looks a lot like Myspace, but is specifically designed for people suffering from major medical problems. I found the site, patientslikeme.com, after reading an article critiquing the site, by New York Times writer, Thomas Goetz. Goetz writes about one man suffering from multiple sclerosis (MS) who used the site to see what kinds of treatments other MS patients were taking. In doing so, he found out that something his doctor told him about the maximum dosage of a drug he was taking may not have been one hundred percent truthful or correct.
The site, patientslikeme.com, allows a user to search for other people who may be suffering from the same ailments and share a wealth of information such as symptoms and treatment, in excruciating detail and also create your own profile.
Although a great deal of profiles on the site are from people suffering from MS, AIDS, ALS and Parkinson’s disease, searching through the “Mood” tab of the website, I was able to view information about patients with mental health problems such as, OCD, Depression and Bipolar Disorder, among others. One thing which is really exciting about this site is that it allows you to track a wide variety of data and expresses it in a graphical format so that it is easy to see fluctuations.
While this site seems like a good place to get information about what others are doing about their illness, please exercise your best judgment when posting your personal health information online, because once you do, it’s out there for all the world to see. Maybe you should test the waters first — joining the site is free, but you can search for profiles and information without signing up for anything.
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3 Responses to “New social networking for the ill dubbed “Myspace for the afflicted”” (Pingbacks/trackbacks not shown below)
Sandy at 7:59 am on
March 23rd, 2008
I would strongly advise against participating in that website — just examine their privacy statement and all of the information they are collecting on everyone who visits! Yikes.
As you noted, everything you reveal about yourself is information that they own and can sell and do whatever they want with, as they are not bound by any HIPAA regulations.
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I would strongly advise against participating in that website — just examine their privacy statement and all of the information they are collecting on everyone who visits! Yikes.
As you noted, everything you reveal about yourself is information that they own and can sell and do whatever they want with, as they are not bound by any HIPAA regulations.
