PatientsLikeMe: Representation in a Patient-Centered Social Network

Founded in 2004, PatientsLikeMe currently provides fourteen different “disease communities” in which approximately 47,000 patients interact using social networking tools akin to those seen on Facebook and health management tools similar to those found in personal health record systems such as Google Health.

This project investigates PatientsLikeMe relative to two important topics in the medical informatics and CSCW communities:

  1. patient-centered care, in which patients and clinicians are a collaborative team, and
  2. the various demands for medical data from both patients and institutional interests

Combining features from both PHR and social network sites (SNS), PLM attempts to address demands for patient-centeredness and involvement through empowering patients in the treatment of their diseases. Interactions are predominantly inter-patient and do not include medical professionals, raising questions about the potential of favoring peer advice over prescribed treatment plans. Additionally, the collection and sale of user data prompts questions related to data ownership, use, and validity.

Adoption of PatientsLikeMe points to the importance of online spaces in which patients can share experiences and receive peer-support consistent with their treatment plans. Investigating the ways in which PLM captures, stores, and presents health information inside of a social network context provides important implications for the design of collaborative patient systems such as PHRs and other online health communities.

team : //

Jed Brubaker, Caitie Lustig, Gillian Hayes

publish : //

Brubaker, J. R., Lustig, C., & Hayes, G. R. (2010). PatientsLikeMe: Empowerment and Representation in a Patient-Centered Social Network. Presented at the CSCW 2010 Workshop on CSCW Research in Healthcare: Past, Present, and Future, Savannah, GA, USA. [pdf]