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

Authors:
Jacob B. Weiss;Eta S. Berner;Kevin B. Johnson;Dario A. Giuse;Barbara A. Murphy;Nancy M. Lorenzi
Affiliations:
High-Wired Communities, LLC, 2123 Fairfax Avenue, Suite 11, Nashville, TN 37212, United States;Department of Health Services Administration, University of Alabama at Birmingham, 1675 University Blvd., Room 534, Birmingham, AL 35294-3361, United States;Department of Biomedical Informatics, Implementation Sciences Laboratory, School of Medicine, 400 Eskind Biomedical Library, 2209 Garland Avenue, Nashville, TN 37232-8340, United States;Department of Biomedical Informatics, Implementation Sciences Laboratory, School of Medicine, 400 Eskind Biomedical Library, 2209 Garland Avenue, Nashville, TN 37232-8340, United States;Vanderbilt-Ingram Cancer Center, School of Medicine, 777 Preston Research Building, 2220 Pierce, Nashville, TN 37232-6307, United States;Department of Biomedical Informatics, Implementation Sciences Laboratory, School of Medicine, 400 Eskind Biomedical Library, 2209 Garland Avenue, Nashville, TN 37232-8340, United States
Venue:
Journal of Biomedical Informatics
Year:
2013

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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.