Recent changes to Facebook’s privacy structure has raised concerns about the safety of user privacy on social networking sites. Are people always aware of the information they are sharing? According to a 2009 study by the Pew Internet & American Life Project, only 30% of Internet users are concerned about the depths of their online presence.
Facebook has been receiving a lot of flak for the introduction of Instant Personalization, which allows third-party websites like Pandora and Yelp to access member information to customize their sites based on users’ recent Facebook activity. The problem arises in the health community, as well. PatientsLikeMe boasts about their Openness Philosophy, which means they can share your health information with outside parties like scientific or market researchers. While the profile data they share is “de-identified,” or aggregated anonymously, personally identifiable information may be reported if it is within free text or pictures in the forums. It is likely that most users remain unaware of this risk.
Everything is out in the open—if you want it to be. Online privacy is essentially up to the user; one must work under the assumption that everything you put on the Web will be seen by anyone, but social networking sites thrive on the ability to share information with your friends. Members use these sites to keep in touch with people through posting pictures, current education and work information, likes, interests and more, but it is very easy to forget about privacy among the fun. Internet users age 18-29 are most active in protecting their online identity, and those aged 30 and above are, on average, only 27% likely to take action.
Healthetreatment invites you to be active in the conversation about your illness, but also to focus on the health of your privacy by using discretion when visiting social networking websites. We benefit from your participation and you have the option to remain totally anonymous while doing so. When you complete the survey about your condition, we ask for your year of birth, gender and postal code for statistical purposes only and it is not attributed to your screen name. Healthetreatment values the information that users help us to generate and want members to feel secure when sharing experiences with other patients.
The way communication has evolved over the last decade has given us many more opportunities to connect with friends, family and even strangers, but we must beware of identifiable information we share on public forums. For a safer experience on community-based websites, make sure you understand privacy settings, privacy policies and if and how your information is being used before posting personal information online.
