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

Abstract

Aims and objectives: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

Keywords:

• Individual care plan
• patient-centred care
• patient participation
• patient and public involvement
• participatory design
• system testing
• user-centred design

Acknowledgements

We thank all the participants who tested the e-ICP tool. The Central Norway Regional Hospital Authority made the pilot testing and therefore this research project was possible. Thanks to the project team and leaders and to the Masters’ students who participated in the project. Also thanks to Margaret Forbes and Penelope Cummins for their contribution in improving the language of the article. Finally, thanks to Professor Anders Grimsmo for his contribution in this project.

Declaration of interest

While this research was in progress, Jorunn Bjerkan was also employed part-time by the hospital trust as a project manager to carry out the testing and implementation process for the e-ICP system. No other potential conflicts of interest have been identified.

Permission for the study was obtained from the Norwegian Social Science Data Services (NSD), project number 14 376 and reported to the Regional Committee for Medical Research Ethics (REK). All personal identifiers have been removed or disguised so the patients/persons described are not identifiable and cannot be identified through the details of the story. Patients or parents of child patients in the pilot testing project were asked to sign consent for participating in this study.