Recommendations for the design, implementation and evaluation of social support in online communities, networks, and groups

Abstract

A new model of health care is emerging in which individuals can take charge of their health by connecting to online communities and social networks for personalized support and collective knowledge. Web 2.0 technologies expand the traditional notion of online support groups into a broad and evolving range of informational, emotional, as well as community-based concepts of support. In order to apply these technologies to patient-centered care, it is necessary to incorporate more inclusive conceptual frameworks of social support and community-based research methodologies. This paper introduces a conceptualization of online social support, reviews current challenges in online support research, and outlines six recommendations for the design, evaluation, and implementation of social support in online communities, networks, and groups. The six recommendations are illustrated by CanConnect, an online community for cancer survivors in Middle Tennessee. These recommendations address the interdependencies between online and real-world support and emphasize an inclusive framework of interpersonal and community-based support. The applications of these six recommendations are illustrated through a discussion of online support for cancer survivors.

Social Media in Healthcare

“…Moser, Ganley and Groenewegen`s [30] study of online communities was guided by social capital, social network, organizing structure and social media communicative genres theory. While Weiss et al, [7] advocate use of social psychological theories including ecological systems theory, community-based participatory research, and social network and social capital theory to study virtual communities.…”

“…Given the "hands-off" stance toward the Internet, it has essentially remained an open information commons that enables everyone to participate in society through digital platforms [5]. Although many have attempted to bring clarity to the definition, there remains widespread confusion about what characterizes social media, to the point that some "…studies [have described] a social media intervention without considering what social media and Web 2.0 actually are or do" [7], [32, p. 959]. This has prompted some researchers to encourage further study to more precisely define social media, social networks and Web 2.0 [31], [32].…”

“…This has prompted some researchers to encourage further study to more precisely define social media, social networks and Web 2.0 [31], [32]. Despite gray areas which seem to imply that Web 2.0 is more of a philosophy than a specific set of technical components, social media literature does, for the most part, integrate three essential concepts: "open sharing, interactivity and collaboration" [33, p. 335] that allows users to create and share content and forge online relationships with minimal editorial control or oversight [5]- [7], [19], [33], [37].…”

Using Social Media While Waiting in Pain: A Clinical 12-Week Longitudinal Pilot Study

“…Results from studies conducted to date are not yet sufficient to inform design or implementation of social media interventions in clinical settings [ 23 ]. Greater emphasis is needed on conceptual research frameworks within a participatory health research paradigm for social media to become useful tools in chronic pain self-management [ 24 ].…”

Does Informatics Enable or Inhibit the Delivery of Patient-centred, Coordinated, and Quality-assured Care: a Delphi Study

“…Although some papers were related to multiple themes, the majority of the papers focused on CMR systems, particularly on studies evaluating the effectiveness on patient health outcomes of using a clinical decision support system [9][10][11][12]. The second most common theme across the literature was patient engagement and communication, especially the use of online patient portals to clearly and succinctly communicate complex clinical information to patients, and engage them in self-management [13,14,15]. Papers focusing on health care provider communication and information sharing were less common, and their focus tended to be on building effective health care models to support coordinated workflows across different providers [16,17].…”