Open Humans: A platform for participant-centered research and personal data exploration

Abstract

Background Many aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This offers an unprecedented chance for human-participant research ranging from the social sciences to precision medicine. With this potential wealth of data comes practical problems (e.g., how to merge data streams from various sources), as well as ethical problems (e.g., how best to balance risks and benefits when enabling personal data sharing by individuals). Results To begin to address these problems in real time, we present Open Humans, a community-based platform that enables personal data collections across data streams, giving individuals more personal data access and control of sharing authorizations, and enabling academic research as well as patient-led projects. We showcase data streams that Open Humans combines (e.g., personal genetic data, wearable activity monitors, GPS location records, and continuous glucose monitor data), along with use cases of how the data facilitate various projects. Conclusions Open Humans highlights how a community-centric ecosystem can be used to aggregate personal data from various sources, as well as how these data can be used by academic and citizen scientists through practical, iterative approaches to sharing that strive to balance considerations with participant autonomy, inclusion, and privacy.

Ultradian rhythms in heart rate variability and distal body temperature anticipate onset of the luteinizing hormone surge

“…Uploaded data was automatically transferred via the internet to the study database in the Oura cloud service. In order to access data from the cloud, data were imported into the Open Humans 100 framework, which provides encrypted, password protected data access to researchers, with the participants’ revocable consent. In addition to data collected by the Oura Ring, participants uploaded personal spreadsheets that tracked days of menstruation, days of LH tests and results, days of urine collection, and notes (e.g., forgot to wear the Oura Ring) to Open Humans.…”

GenomeChronicler: The Personal Genome Project UK Genomic Report Generator Pipeline

“…It is designed to be easily expandable, adaptable to other contexts and most of all, suitable for projects with a wide range of ethical requirements, from those that need the data to be processed inside a safehaven environment to those that process all the data in the public domain. It can also be of interest to educational groups such as Open Humans (Greshake et al, 2019). Open Humans 8 is a vibrant community of researchers, patients, data and citizen scientists who want to learn more about themselves.…”

Emerging health data platforms: From individual control to collective data governance

“…These include personal health data such as wearable device data and genomic data-from various sources. Members registered with the platform are encouraged to decide how their data are used, for personal data exploration, as well as sharing with participant-led or academic research projects (Greshake Tzovaras et al, 2019). By aggregating personal health data from a variety of sources and putting the individual in control of the data, Open Humans aims to provide individuals access to their own data-breaking down silos-and increasing control over their data.…”