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

Tracking #: 596-1576


Vero Estrada-GaliñanesORCID logo
Katarzyna WacORCID logo

Responsible editor: 

Robert Hoehndorf

Submission Type: 

Research Paper


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 not 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 cease to exist and the users are left 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.


Supplementary Files (optional): 


  • Reviewed

Data repository URLs: 


Date of Submission: 

Friday, July 19, 2019

Date of Decision: 

Tuesday, September 17, 2019

Nanopublication URLs:



Solicited Reviews:

1 Comment

Meta-Review by Editor

The manuscript has been reviewed by three experts. The reviewers agree that the topic is timely, novel, and important, but also identified several minor issues that must be addressed before the manuscript can be published. In particular, Reviewer 2 highlights a number of important points related to clinical, personal, and commercial data sharing, and the reviewer lists several references that should be taken into account in a more elaborate discussion. Reviewers 1 and 2 also highlight several minor points that should be addressed in the revised manuscript.

Robert Hoehndorf (