De‐constructing the co‐construction: Researcher stance, the nature of data and community building in an online participatory platform to create a knowledge repository

Abstract

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.

Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study

“…Owens et al [ 10 ], Dyson et al [ 12 ], Greenwood et al [ 14 ], and Han et al [ 15 ] engaged with parents, patients, carers, and other stakeholders to generate research questions for children with special needs, respiratory conditions, and people with diabetes. A total of 4 studies used purpose-built websites [ 10 , 12 , 13 , 15 ], and 3 studies used social media [ 11 , 12 , 14 ]. In addition to their website, Dyson et al [ 12 ] used Facebook and Twitter to work with parents but with limited success.…”