Patient Driven, Patient Centered Care: Examining Engagement within a Health Community Based on Twitter

Abstract

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.