Visions and challenges in managing and preserving data to measure quality of life
Publikation: Bidrag til bog/antologi/rapport › Konferencebidrag i proceedings › Forskning › fagfællebedømt
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Visions and challenges in managing and preserving data to measure quality of life. / Estrada-Galinanes, Vero; Wac, Katarzyna.
Proceedings - 2018 IEEE 3rd International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018. IEEE, 2019. s. 92-99 8599538.Publikation: Bidrag til bog/antologi/rapport › Konferencebidrag i proceedings › Forskning › fagfællebedømt
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TY - GEN
T1 - Visions and challenges in managing and preserving data to measure quality of life
AU - Estrada-Galinanes, Vero
AU - Wac, Katarzyna
PY - 2019
Y1 - 2019
N2 - Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.
AB - Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.
KW - Cooperative health system
KW - Crowdsourcing data
KW - Data governance
KW - Data stewardship
KW - Ethical challenges
KW - Health related data
KW - Quality of life
KW - Rich data
KW - Self regulated system
KW - Storage architectures
U2 - 10.1109/FAS-W.2018.00031
DO - 10.1109/FAS-W.2018.00031
M3 - Article in proceedings
AN - SCOPUS:85061541117
SP - 92
EP - 99
BT - Proceedings - 2018 IEEE 3rd International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018
PB - IEEE
T2 - 3rd IEEE International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018
Y2 - 3 September 2018 through 7 September 2018
ER -
ID: 214133711