This paper investigates a web-based, medical research network that relies on patient self-reporting to collect and analyze data on the health status of patients, mostly suffering from severe conditions. The network organizes patient participation in ways that break with the strong expert culture of medical research. Patient data entry is largely unsupervised. It relies on a data architecture that encodes medical knowledge and medical categories, yet remains open to capturing details of patient life that have as a rule remained outside the purview of medical research. The network thus casts the pursuit of medical knowledge in a web-based context, marked by the pivotal importance of patient experience captured in the form of patient data. The originality of the network owes much to the innovative amalgamation of networking and computational functionalities built into a potent social media platform. The arrangements the network epitomizes could be seen as a harbinger of new models of organizing medical knowledge creation and medical work in the digital age, and a complement or alternative to established models of medical research.
Digital artifacts are embedded in wider and constantly shifting ecosystems such that they become increasingly editable, interactive, reprogrammable, and distributable. This state of flux and constant transfiguration renders the value and utility of these artifacts contingent on shifting webs of functional relations with other artifacts across specific contexts and organizations. By the same token, it apportions control over the development and use of these artifacts over a range of dispersed stakeholders and makes their management a complex technical and social undertaking. These ideas are illustrated with reference to (1) provenance and authenticity of digital documents within the overall context of archiving and social memory and (2) the content dynamics occasioned by the findability of content mediated by Internet search engines. We conclude that the steady change and transfiguration of digital artifacts signal a shift of epochal dimensions that calls for rethinking some of the inherited wisdom in IS research and practice.