Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 24, 2020
Date Accepted: Sep 13, 2020
Co-design as an imperfect democratic process yet offering a potential to support the development of inclusive eHealth tools for caregivers of functionally dependent older persons: social justice design
ABSTRACT
Background:
eHealth can help to reduce social health inequalities (SHI) as much as it can exacerbate them. Taking a co-design approach to the development of eHealth tools has the potential to ensure that these tools are inclusive. However, there is very little empirical evidence to demonstrate the mechanism that supports this hypothesis.
Objective:
Based on Amartya Sen’s theoretical framework of social justice, the objective of this study is to explore how co-design can support the development of inclusive eHealth tools.
Methods:
This study is based on a social justice design and participant observation as part of a large-scale research project funded by the Ministère de la famille through the Québec Ami des Aînés program. Analysis was based on the method developed by Miles and Huberman and on Paillé’s analytical questioning method.
Results:
Seventy-eight people participated in 11 co-design sessions in 11 Quebec regions. Twenty-four preparatory meetings and 11 debriefing sessions were required to complete this process. Co-designers participated in the creation of a prototype to support the search for formal services for caregivers. The majority of participants (except for two) significantly contributed to the tool’s designing. In the course of the experiment, the research team’s position regarding its role in co-design evolved from a neutral posture and promoting co-designer participation to one that was more pragmatic.
Conclusions:
The use of co-design involving participants at risk of SHI does not guarantee innovation, but it does guarantee that the tool developed will respect their process of help-seeking and their literacy level. Time works against attempts to carry out a democratic process in its ideal form. It would be useful to single out some key issues to guide researchers on what should be addressed in co-design discussions and what can be left out to make optimal use of this approach in a real-world context.
Citation
Per the author's request the PDF is not available.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.