Simulating the Rare Disease Diagnostic Journey

Emily Esther Nielsen, Tom Owen, Matthew Roach, Alan Dix

Research output: Chapter in Book/Report/Conference proceedingConference contributionpeer-review

Abstract

In this paper, we propose a demonstration of a race to diagnosis game for a given rare condition. By simulating a rare disease diagnosis scenario, we can attain statistical significance to evaluate pre-diagnostic technology in a laboratory study (which will take place after the conference) by recruiting participants from the general population, rather than from rare disease groups. No data will be collected at the conference, but attendees will be given the opportunity to play the game using an interactive presentation. This demonstration will facilitate discussions on creative solutions to challenges regarding participant recruitment as well as alternative approaches to study design.

Original languageEnglish
Title of host publicationEICS 2023 Companion - Companion of the 2023 ACM SIGCHI Symposium on Engineering Interactive Computing Systems
PublisherAssociation for Computing Machinery, Inc
Pages79-81
Number of pages3
ISBN (Electronic)9781450390316
DOIs
Publication statusPublished - 27 Jun 2023
Externally publishedYes
Event15th ACM SIGCHI Symposium on Engineering Interactive Computing Systems, EICS 2023 -
Duration: 27 Jun 202330 Jun 2023

Publication series

NameEICS 2023 Companion - Companion of the 2023 ACM SIGCHI Symposium on Engineering Interactive Computing Systems

Conference

Conference15th ACM SIGCHI Symposium on Engineering Interactive Computing Systems, EICS 2023
Period27/06/2330/06/23

Keywords

  • co-design
  • participatory design
  • patient centred design
  • rare disease

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