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

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

UR - http://www.scopus.com/inward/record.url?scp=85061541117&partnerID=8YFLogxK

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 -