This paper describes an innovative effort to invite the public to participate in the creation of a public resource -to leverage collective wisdom in the health domain. This project involved building a website where people could contribute their experiences of body listening and how they learned/were learning to do it. Within the context of this study, body listening was described as the act of paying attention to the body's signals and cues, which can improve individuals' long-term health management. Over the course of the study, participants and moderators together authored 431 posts and contributed 818 tags. This paper presents an initial analysis of these tags.This analysis makes several intellectual contributions. First, we present a preliminary classification scheme for concepts associated with body listening and selfmanagement that might be used in future efforts to organize knowledge in this domain. Second, we evaluate interannotator agreement using this classification scheme, to characterize its potential for use in future work.
BackgroundBody listening, described as the act of paying attention to the body’s signals and cues, can be an important component of long-term health management.ObjectiveThe aim of this study was to introduce and evaluate the Body Listening Project, an innovative effort to engage the public in the creation of a public resource—to leverage collective wisdom in the health domain. This project involved a website where people could contribute their experiences of and dialogue with others concerning body listening and self-management. This article presents an analysis of the tags contributed, with a focus on the value of these tags for knowledge organization and incorporation into consumer-friendly health information retrieval systems.MethodsFirst, we performed content analysis of the tags contributed, identifying a set of categories and refining the relational structure of the categories to develop a preliminary classification scheme, the Body Listening and Self-Management Taxonomy. Second, we compared the concepts in the Body Listening and Self-Management Taxonomy with concepts that were automatically identified from an extant health knowledge resource, the Unified Medical Language System (UMLS), to better characterize the information that participants contributed. Third, we employed visualization techniques to explore the concept space of the tags. A correlation matrix, based on the extent to which categories tended to be assigned to the same tags, was used to study the interrelatedness of the taxonomy categories. Then a network visualization was used to investigate structural relationships among the categories in the taxonomy.ResultsFirst, we proposed a taxonomy called the Body Listening and Self-Management Taxonomy, with four meta-level categories: (1) health management strategies, (2) concepts and states, (3) influencers, and (4) health-related information behavior. This taxonomy could inform future efforts to organize knowledge and content of this subject matter. Second, we compared the categories from this taxonomy with the UMLS concepts that were identified. Though the UMLS offers benefits such as speed and breadth of coverage, the Body Listening and Self-Management Taxonomy is more consumer-centric. Third, the correlation matrix and network visualization demonstrated that there are natural areas of ambiguity and semantic relatedness in the meanings of the concepts in the Body Listening and Self-Management Taxonomy. Use of these visualizations can be helpful in practice settings, to help library and information science practitioners understand and resolve potential challenges in classification; in research, to characterize the structure of the conceptual space of health management; and in the development of consumer-centric health information retrieval systems.ConclusionsA participatory platform can be employed to collect data concerning patient experiences of health management, which can in turn be used to develop new health knowledge resources or augment existing ones, as well as be incorporated into consume...
Purpose: Individuals rely upon many types of information to manage an illness, including information provided by their own bodies. This study investigated how people tune into and manage the flow of information from their bodies to manage their health. Method: We developed a platform for participants to share and collaboratively reflect on how they engaged in this dialogic process, in which participants contributed to a discussion on topics relating to body listening and body awareness. Though the study was open to anyone interested in or wanting to contribute to knowledge on “body listening,” the social media recruitment focused on chronic conditions requiring self-care and having overlapping symptomatology, with chronic pain as the primary characteristic. A qualitative analysis method based on grounded theory was used to analyse the data. Results: Six main themes emerged: learning the language, recognizing and heeding limits, experiencing emotional fatigue and despair, regulating the channel, moving from conflict to communication, and settling into an uneasy acceptance. Conclusion: The monitoring and filtering of information from one’s body, and the appeasement of conflicting demands and voices, is difficult work. Knowledge of this process can be used in patient education and in the development of tools to support body listening.
In this article, we provide a reflexive account of the design of the Body Listening Project, a participatory platform in which participants were invited to engage collectively in the building of a public repository. The Body Listening Project was an online collaborative space, with a designated "ThinkSpace," for participants and moderators to share their experiences of "body listening" and more broadly, self-management of health. The participatory platform on which the study took place was an active, evolving environment that was shaped by participants of many different backgrounds. In particular, we elaborate upon three critical aspects of our research design: researcher stance, the nature of data, and online community development. It is our hope that explicating the design decisions that were made in this study can stimulate researchers' consideration of these issues in their own projects, as well as inform the design of future research involving collaborative and participatory frameworks.
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