Collecting, exploring and sharing personal data: Why, how and where

Abstract

New, multi-channel personal data sources (like heart rate, sleep patterns, travel patterns, or social activities) are enabled by ever increased availability of miniaturised technologies embedded within smartphones and wearables. These data sources enable personal self-management of lifestyle choices (e.g., exercise, move to a bike-friendly area) and, on a large scale, scientific discoveries to improve health and quality of life. However, there are no simple and reliable ways for individuals to securely collect, explore and share these sources. Additionally, much data is also wasted, especially when the technology provider ceases to exist, leaving the users without any opportunity to retrieve own datasets from “dead” devices or systems. Our research reveals evidence of what we term human data bleeding and offers guidance on how to address current issues by reasoning upon five core aspects, namely technological, financial, legal, institutional and cultural factors. To this end, we present preliminary specifications of an open platform for personal data storage and quality of life research. The Open Health Archive (OHA) is a platform that would support individual, community and societal needs by facilitating collecting, exploring and sharing personal health and QoL data.