AM Posters 2009 START Conference Manager    

PatientsLikeMe: Social Norms and Information Values in an Online Health Support Group

Gary Burnett, Mia Liza Lustria, Juliann Cortese, Michelle Kazmer, Jeana Frost, Ji-Hyun Kim and Jinxuan Ma

(Submission #70)


Online social support groups have been found to improve coping, enhance the quality of life, facilitate health decision-making, and in some cases, increase survival time among chronic disease patients. As in any other social setting, participants in online support groups interact in ways that establish and reinforce what Elfreda Chatman called their “Small World” community norms and that, further, reflect the information values of the community. Such norms and values emerge both explicitly through rules that govern the community’s behavior and implicitly through the give and take of the day-by-day interactions of community members. PatientsLikeMe (PLM) is an online community that uses an asynchronous discussion forum to allow its members to share not only social support but also their symptomatology, treatment, medication, and outcome information with other members. The current study focuses on a qualitative analysis of the ALS community within PLM. ALS (amyotrophic lateral sclerosis), or Lou Gehrig’s disease, is a rare and incurable life-altering disease affecting approximately 30,000 Americans. The focuses on a subset of a larger dataset of 1000 posts to analyze the role of shared social norms and information values in the PLM community. We will present a brief overview and analysis of both threads as instances of the social role of information within the normative expectations and behaviors of a community. It will raise questions about the place of social interaction processes related to the ways in which specific communities – or “Small Worlds” – deal with information as an element of their social world. It seems likely that the issues raised by these threads in this particular community are linked to the community’s expectations that community members expressions of empathy and support follow normative patterns, and that such expectations are a function of the community’s efforts to cope with the degenerative disease that links them all.

START Conference Manager (V2.54.6)