Patients' contribution to the development of a web-based plan for integrated care - a participatory design study

The aim was to explore how a participatory design (PD) approach involving adult patients and parents of children with disabilities could contribute to the development of an electronic "Individual Care Plan" (e-ICP) in Norway. The system was intended to simplify multi-disciplinary cross-sector documentation and collaboration between care professionals and patients in care planning.

The data in the study comprised semi-structured interviews with patients and parents, as well as field notes. Systematic text condensation (STC) in a stepwise analysis model was performed on the data.

Testing through three phases resulted in system improvements and additional functionality according to the participating patients' needs and requests. PD was initially applied, enabling a constructive dialogue between developers and patients. System training and collecting patient expectations was a preliminary task. Patients then brought testing experiences to the system developers, focusing first on access to information and document filing. Later, finalizing testing towards a tool for interaction with care professionals was a main concern.

Adult patients and parents participating in the study provided various insights and expectations that informed system improvements and resulted in new functionality. System development and testing in healthcare can successfully incorporate patient involvement.