The department wants to research the impact of online social networks on health decision behavior. Sounds reasonable: if people are using online communities like Facebook and health-specific sites like PatientsLikeMe and CureTogether to seek and share health information, they and their health care providers and even the site designers have a logical interest in finding out how good that information is and how much that information is affecting the decisions people make about their medicine, nutrition, treatments, etc.

Now when I think of an online social network, particularly a health-specific online community, I think of regular folks coming together to talk about their health issues. They seek knowledge because they or someone they care about is ailing. They share knowledge because they want to help others and enjoy a sense of belonging to the community. I might even go so far as to say that they share knowledge because building narratives, individually and collaboratively, is how we make sense of the world and particularly of illness; narrative is an essential component of the healing process. But that’s just me getting distracted again.

So what if the online social network isn’t just a congenial and organic aggregation of mostly well-meaning individuals interested in learning and sharing useful medical knowledge? What if the online social network is, in part or whole, a marketing strategy? What if the primary goal of the network is not to build community or make patients lives better but to increase profit margins?

That concern rises from an NPR report this afternoon on drug companies’ embrace of social media. Novartis was promoting a cancer drug on its website with a Facebook Share widget, letting people spread the word about Novartis’s product. But it’s like the classic “Where’s the Unlike button?” problem on Facebook: Novartis didn’t provide a way for people to share negative information about the drug with equal ease. FDA sent Novartis a warning, and Novartis took down the Share widget, but the company is still working on social-media marketing tactics that will pass regulatory muster.

NPR also points to the example of ShareYourPain.com, an entire social networking site created by drugmaker Cephalon. That ownership raises all sorts of questions about what information company moderators might favor and how authentic all information and participants in the site may be.

NPR says FDA is working on rules for medical marketing via social media. In the mean time, I suggest the following research questions for information systems folks and others:

  1. What percentage of information on health-specific online social networks is actually marketing?
  2. How effectively can participants in social networks distinguish health information from fellow lay people, health care professionals, and commercial sources?
  3. If participants can distinguish marketing from pharmaceutical companies and other vendors from other information, to what extent do they listen to that marketing? Does that marketing have any greater effect on their health decisions than other information?
  4. Are social network participants able to use the online social network and other online tools to effectively investigate and verify the information they receive from marketing sources?
Advertisements