Building an online community to support local cancer survivorship: combining informatics and participatory action research for collaborative design

Abstract

The purpose of this research was to evaluate the collaborative design of an online community for cancer survivorship in middle Tennessee. The four primary aims of this qualitative study were to define the local cancer survivorship community, identify its strengths and opportunities to improve, build an online community to address these opportunities, and evaluate the collaborative design and development of this online community. A total of 43 cancer survivors, family members, health-care professionals, and community professionals participated in key informant interviews, sense of community surveys, and the collaborative design of the online community over a one-year period. The results of this study include a formal definition of the local cancer survivorship community and illustrate how support for cancer survivors extends throughout the local community. Six opportunities were identified to improve the sense of community in the local cancer survivorship community, and an online community was successfully developed to address these opportunities. The evaluation of the collaborative process resulted in a seven element framework for the discovery and development of community partnerships for informatics design. These results demonstrate the potential for an informatics-based approach to bring local communities together to improve supportive care for cancer survivors. Implications of the findings call for a new initiative for cancer survivorship that uses emerging web-based technologies to improve collaborative cancer care and quality of life in local communities.