A pilot project exploring the feasibility of enlisting health information & support networks to enable health information seekers, using semantic web middleware

• Main Author: Gardner, Jesse William
• Other Authors: Kuo, Alex
• Format: Others
• Language: English; en
• Published: 2019
• Subjects: web semantics; health information seeking; support networks; information retrieval; resource collection; everyday life information seeking; participatory action research; communities of health; spina bifida; hydrocephalus; needs analysis
• Online Access: http://hdl.handle.net/1828/11194

My Thesis posits a novel method of utilizing emerging web semantics, through HTML5 markup; to improve experience of Health Information seekers through a framework for creating functional, tailored Health Information Resource Collections potentially hosted by their own Health Information Support Networks; and based upon long-standing principles of online Information Retrieval. Most such organizations have websites, with links to useful Resources. This research exemplifies how to design and to present the Resource Collections as pathfinders to existing online Health Information, adding context to each link, to directly address the needs of each community served. The research appeals to a Needs Analysis process rooted in Everyday Life Information Seeking research methodologies, especially Participatory Action Research. As a pilot project, the Needs Analysis focuses necessarily on the Spina Bifida & Hydrocephalus community – with which the author of the Thesis is intimately familiar as a person living with Hydrocephalus, making the choice of a Participatory Action Research framework ideal – and enlisted just one National (Canada) and one Regional (British Columbia) Association for the same rationale. Results of the Needs Analysis were used to identify necessary Resources, but also to select familiar web tools and technologies for design of the Resource Collection and Resource Cards. At completion, there is a functional Collection of Spina Bifida & Hydrocephalus Resources for researchers, caregivers, or patients with Spina Bifida and/or Hydrocephalus – not limited to members of any organization, but best suited by design to the two through which analysis was done. === Graduate