Integrating Users in an Interactive Video Education Project: Reframing the Patient-Centered Strategy of a Cystic Fibrosis Centre

Abstract

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 professionals affiliated to SCH’s Cystic Fibrosis Team gave presentations on medical and psychosocial aspects related to cystic fibrosis (CF). These webcasts were first intended to educate and be educational to children between the ages of twelve and eighteen, but during the first year of the project they failed to attract this specific 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 shifted his attention from live interaction to the expansion of the video library, where the webcasts were stored for on demand viewing. Based on interviews and participant observations, we describe how the initiator reconfigured the WebPEP application and its users, and therewith reframed 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 different, coexisting practices of patient-centeredness. We conclude with a reflection on how formative research methods can contribute to the development of PCEH.