Designing a participatory ethical governance framework

Abstract

Purpose: This project aimed to instill a sense of confidence in elderly technology users by integrating medical devices for homecare into existing eldercare services in community. The research team has pursued a consensus building in tribal areas through the Jin-yue Community Development Association IJYCDA) and has participated in negotiations to gain support from the Nan-Ao Health Station since April 2012 1. However, a lack of motivation among residents for turning the community building into a community health building, along with limited confidence in association members, have been key factors impeding the establishment of further community health services for the elderly. The living lab concept, with its appreciation of user innovation, can serve as a tool for mediating between interest groups and stakeholders as we work with the IJYCDA to shape a participatory ethical governance framework for mobilizing the elderly and for enhancing mutual supportive networks in the community 2. Methods: With support from the research team and consent from community residents, the JYCDA drew up a contract for promoting community health. The contract identified certain association members as health surrogates 3. This contract serves as a legal and ethical foundation for the Jin-yue Community Development Association to work with all participants, managing both individual and collective health data. After public consultation meetings, residents were willing to cooperate with the research team to develop a pilot project, which set up a Living Lab for innovation in community health monitoring and made use of available health data. A participatory ethical governance platform for benefits sharing was established in this manner. Results & Discussion: We encourage individual healthcare device users to join in community health building efforts focused especially on the elderly, an activity supported by the tribal association. The project creates new community building momentum through a partnership between the research team and the tribal association. The partnership laid out a blueprint for health maintenance and promotion 4. We reached a consensus that all health devices provided for Living Lab research would be free for tribal people and collectively owned by the association. A web-based flow chart for introducing new devices or programs into the community was approved. On this basis, a community-based collective innovation platform was established for further product design or business plan development 5. We then initiated a web-based community- oriented health appointment management system to facilitate elderly home care device users to be part of a mutually supportive health care network, supervised and supported by the Nan-Ao Health Station.