This dissertation explores an online health community called BCSM (Breast Cancer Social Media) established on Twitter. Through interviews and analysis of tweets with the #bcsm hashtag, the author finds that the community provides clinical and emotional support, information sharing, and knowledge translation between patients, providers, advocates, researchers, and caregivers. The community exhibits "cross-peer engagement", where individuals of differing statuses interact, and forms "microspurs", new relationships that result from community participation and expand support networks. The research contributes to understanding how social media enables a novel form of patient-centered healthcare through online communities.

1. Patient Driven, Patient Centered Care: Examining Engagement within a Health
Community Based on Twitter
A Dissertation Presented to the Faculty of
The Heller School for Social Policy and Management
Brandeis University, Waltham, MA
By Jodi Sperber, MSW, MPH
Today’s emerging patient centered health movement is focused not on a specific condition
or demographic, but rather on shifting the balance of power and enabling access to
information to drive decision-making in healthcare. This takes place through electronic
health records as well as more generalized sources. The uptake of social media is
contributing to an innovation in patient centered healthcare: information and support on a
global scale is coming not only from the formal healthcare system, but also within online
social networks. Today, through computer-mediated interactions, patients are not only
seeking information, they are curating and sharing information. Subsequently, patients are
also creating information, establishing a novel ecosystem of engagement that has the
potential to disrupt the current healthcare system.
This dissertation explores an online health community, BCSM (which stands for “breast
cancer social media”), established using Twitter, a largely public and searchable social
media platform. Drawing primarily from social network theory, disruptive innovation, and
ecological systems theory, this research identifies essential characteristics within the
community that may inform future development and support for patient centered
healthcare. To conduct this research, a blended approach of netnography – referring to the
approach of ethnography applied to the study of online cultures and communities – and in-
depth interviews with BCSM participants were employed.
Data collected via interviews and tweets using the hashtag #bcsm provide evidence of
clinical support, emotional support, information sharing, and knowledge translation.
Underpinning this activity is the opportunity to associate not only with peers, but also with
individuals of varying roles (including patients, providers, advocates, researchers, and
caregivers). As evidenced by the data collected, educational opportunities flow in both
directions.
This work contributes to the larger corpus of health-related literature in the identification
and naming of a significant community element that has seen little focused attention: cross-
peer engagement, a term used to highlight the interaction amongst individuals of differing
status, ability, or rank. This research also documents the formation of microspurs, defined
as relationships that form as a result of community participation. These come in many
forms and range from expanding a personal support network to participation in federal
policy work. Findings suggest that the future of healthcare will not revolve around
hospitals and bounded systems. Instead, patients will demand an expanded set of entry
points for health information sharing, knowledge transfer, condition management, and
general support.