Social Networking and Health Care

Social networking has taken over the world. Facebook and YouTube are two of the most trafficked sites in the world, with MySpace and Twitter not far behind. Aside from these major sites there are an infinite number of smaller forums, where people get involved in ‘virtual communities.’ Some of them, like patientslikeme.com, are about people’s health. I spoke with Oakland University Professor of Management Information Systems Balaji Rajagopolan, about the good and the bad when it comes to this type of virtual community.

Professor Rajagopolan is currently beginning research on health related social networks for a new study about the interaction between virtual communities and health information. “We chose to study health care because of the extent to which people are relying on the internet for health information,” he says. According to a recent Pew Internet study 61% of Americans are looking online for health information, 60% of these say what they read affected their decision about how to treat an illness or condition, and 53% said it led them to ask their doctor new questions or get a second opinion.

Obviously the amount of information out there to inform patients is very useful, especially coming from a trusted website. When the information is coming from a social network, where anyone can say anything, it’s harder to know what information is trustworthy. Individuals who are ignorant but sound knowledgeable could be giving out bad advice, or a corporation itself could use employees to create fake users to subtly promote their own products. “There is an opportunity for an organization to come in and set standards, to see how communities are maintained, so erroneous info is not part of the content,” the professor says. Something like a Better Business Bureau for social networks.

Aside from the risks of bad information, what about privacy? “The extent to which people are willing to share personal information on social networks is astonishingly high,” Professor Rajagopalan says. Anyone can go on the incredibly interesting website patientslikeme.com, and find out what diseases a random user has, or how depressed they are feeling that day, within seconds. The users don’t usually reveal their real names, but many of them do put their (seemingly) real pictures up. In addition to that, patientslikeme.com makes money by selling aggregated information to drug companies, and its partner Novartis uses the site to recruit for clinical trials. This does raise some ethical questions as this information is not clearly made known to the user at sign up.

However, in the end these issues may not be very important to those who frequent these virtual communities, because the main reason people join is to connect with others who are facing similar challenges. With the virtual communities, it’s possible someone who was just diagnosed will find another person who is in the exact same situation they are, who can give them very specific advice. “If you look at their physical network, it is very unlikely they will find this kind of support in their real life relationships,” the professor says, “Participating in virtual communities opens the doors and provides great benefits.” The question is, when it comes to information on the internet, do people just make low risk decisions based on what they read, or are they willing to make high risk decisions based on it? Finding the answer to this question is one of the goals of Professor Rajagopalan’s research.