Visions and challenges in managing and preserving data to measure quality of life

Publikation: Bidrag til bog/antologi/rapportKonferencebidrag i proceedingsForskningfagfællebedømt

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.

OriginalsprogEngelsk
TitelProceedings - 2018 IEEE 3rd International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018
Antal sider8
ForlagIEEE
Publikationsdato2019
Sider92-99
Artikelnummer8599538
ISBN (Elektronisk)9781538651759
DOI
StatusUdgivet - 2019
Begivenhed3rd IEEE International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018 - Trento, Italien
Varighed: 3 sep. 20187 sep. 2018

Konference

Konference3rd IEEE International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018
LandItalien
ByTrento
Periode03/09/201807/09/2018

Links

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