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Review
. 2019 Jun 1;8(6):giz076.
doi: 10.1093/gigascience/giz076.

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

Bastian Greshake Tzovaras  1   2 , Misha Angrist  3 , Kevin Arvai, Mairi Dulaney  1 , Vero Estrada-Galiñanes  4   5 , Beau Gunderson, Tim Head  6 , Dana Lewis  7 , Oded Nov  8 , Orit Shaer  9 , Athina Tzovara  10   11 , Jason Bobe  12 , Mad Price Ball  1
Affiliations
Review

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

Bastian Greshake Tzovaras et al. Gigascience. .

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.

Keywords: citizen science; crowdsourcing; database; open data; participatory science; peer production; personal data.

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Figures

Figure 1
Figure 1
The Open Humans authorization flow. A Member (center) can join Projects and approve them to read or write Data. The Member approves Project A to deposit files (blue) into their account. They also approve Project B to read the files that Project A has deposited. Additionally, the Member approves Project C to both read the files of Project A and write new files. The Member declines to give access to their personal data to Project D.
Figure 2
Figure 2
Self-quantification data from Fitbit project. Number of public records from January 2009 until October 2018 (cumulative total).
Figure 3
Figure 3
Personal Data Notebooks in Open Humans. Any Member (e.g., ”Person A,” left) can create a Notebook to explore their personal Data using the Personal Data Notebooks project. They can then choose to share a Notebook via the Personal Data Exploratory. This allows another Member (e.g., ”Person B,” right) to load a copy of the Notebook and run it, privately, to produce their own analysis.
See this image and copyright information in PMC

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