Integrating users in an interactive video education project: Reframing the patient-centered strategy of a cystic fibrosis centre

This article reports on the formative evaluation of WebPEP ("Web-Based Patient Education Program"), an interactive video education project at ErasmusMC-Sophia Children's Hospital (SCH) in Rotterdam, the Netherlands. Through monthly live webcasts, doctors, nurses, psychologists, and other healthcare prof essionals af f iliated to SCH's Cystic Fibrosis Team gave presentations on medical and psychosocial aspects related to cystic f ibrosis (CF). These webcasts were f irst intended to educate and be educational to children between the ages of twelve and eighteen, but during the f irst year of the project they failed to attract this specif ic group. Instead, they generated unexpected enthusiasm among parents of young patients. The central question in this article is: How were patients "integrated" in the development of the WebPEP application? We show how the project's initiator reacted to the lacking participation by prospective users: informed by the evaluation, he gradually shif ted his attention from live interaction to the expansion of the video library, w here the webcasts were stored for on demand view ing. Based on interview s and participant observations, we describe how the initiator reconf igured the WebPEP application and its users, and therewith ref ramed the CF Centre's online patient education strategy. We discuss the importance of investigating the prospective and actual use of patient-centered e-health (PCEH) applications, and argue that a single technological artefact can be involved in dif ferent, coexisting practices of patient-centeredness. We conclude with a ref lection on how formative research methods can contribute to the development of PCEH.