This March, a report on chronic disease and the Internet by the Pew Internet and American Life Project and the California HealthCare Foundation showed that people fighting such illnesses are using social media to find information and connect with others who suffer similar ailments.
While the research showed that people who have chronic illness are less likely, on average, to haveInternet access, once they're online they are more likely to blog about chronic disease and participate in online discussions or other forums. According to the report, "Living with chronic disease is also associated, once someone is online, with a greater likelihood to access user-generated health content such as blog posts, hospital reviews, doctor reviews, and podcasts. These resources allow an internet user to dive deeply into a health topic, using the internet as a communications tool, not simply an information vending machine."
Finding the right balance between individual privacy rights and community benefit will, however, require online services to thread regulatory needles and provide clear guidance to users about how their information will be used. Below are five examples of online services, platforms or projects that are working to strike that balance, providing a means for patients and citizens to share their experiences.
