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

Vero Estrada-Galinanes; Katarzyna Wac

doi:10.1109/FAS-W.2018.00031

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

Vero Estrada-Galinanes, Katarzyna Wac

2 Citations (Scopus)

Abstract

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.

Original language	English
Title of host publication	Proceedings - 2018 IEEE 3rd International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018
Number of pages	8
Publisher	IEEE
Publication date	2019
Pages	92-99
Article number	8599538
ISBN (Electronic)	9781538651759
DOIs	https://doi.org/10.1109/FAS-W.2018.00031
Publication status	Published - 2019
Event	3rd IEEE International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018 - Trento, Italy Duration: 3 Sept 2018 → 7 Sept 2018

Conference

Conference	3rd IEEE International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018
Country/Territory	Italy
City	Trento
Period	03/09/2018 → 07/09/2018

Keywords

Cooperative health system
Crowdsourcing data
Data governance
Data stewardship
Ethical challenges
Health related data
Quality of life
Rich data
Self regulated system
Storage architectures

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1109/FAS-W.2018.00031

Cite this

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. p. 92-99 8599538.

Research output: Chapter in Book/Report/Conference proceeding › Article in proceedings › Research › peer-review

Estrada-Galinanes, V & Wac, K 2019, Visions and challenges in managing and preserving data to measure quality of life. in Proceedings - 2018 IEEE 3rd International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018., 8599538, IEEE, pp. 92-99, 3rd IEEE International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018, Trento, Italy, 03/09/2018. https://doi.org/10.1109/FAS-W.2018.00031

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abstract = "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.",

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KW - Ethical challenges

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KW - Quality of life

KW - Rich data

KW - Self regulated system

KW - Storage architectures

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ER -

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

Abstract

Conference

Keywords

UN SDGs

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