TY - GEN
T1 - Simulating the Rare Disease Diagnostic Journey
AU - Nielsen, Emily Esther
AU - Owen, Tom
AU - Roach, Matthew
AU - Dix, Alan
N1 - Publisher Copyright:
© 2023 Owner/Author.
PY - 2023/6/27
Y1 - 2023/6/27
N2 - 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.
AB - 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.
KW - co-design
KW - participatory design
KW - patient centred design
KW - rare disease
UR - http://www.scopus.com/inward/record.url?scp=85168355396&partnerID=8YFLogxK
U2 - 10.1145/3596454.3597188
DO - 10.1145/3596454.3597188
M3 - Conference contribution
AN - SCOPUS:85168355396
T3 - EICS 2023 Companion - Companion of the 2023 ACM SIGCHI Symposium on Engineering Interactive Computing Systems
SP - 79
EP - 81
BT - EICS 2023 Companion - Companion of the 2023 ACM SIGCHI Symposium on Engineering Interactive Computing Systems
PB - Association for Computing Machinery, Inc
T2 - 15th ACM SIGCHI Symposium on Engineering Interactive Computing Systems, EICS 2023
Y2 - 27 June 2023 through 30 June 2023
ER -