  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.
