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

Research output: Chapter in Book/Report/Conference proceedingArticle in proceedingsResearchpeer-review

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 languageEnglish
Title of host publicationProceedings - 2018 IEEE 3rd International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018
Number of pages8
PublisherIEEE
Publication date2019
Pages92-99
Article number8599538
ISBN (Electronic)9781538651759
DOIs
Publication statusPublished - 2019
Event3rd IEEE International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018 - Trento, Italy
Duration: 3 Sep 20187 Sep 2018

Conference

Conference3rd IEEE International Workshops on Foundations and Applications of Self* Systems, FAS*W 2018
LandItaly
ByTrento
Periode03/09/201807/09/2018

    Research areas

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

Links

ID: 214133711