Disease surveillance data sharing for public health: the next ethical frontiers

Patty Kostkova

doi:10.1186/s40504-018-0078-x

Abstract

In the recent years, we have been witnessing a digital revolution in public and global health creating unprecedented opportunities for epidemic intelligence and public health emergencies. However, these opportunities created a double edge sword as access to data, quality monitoring and assurance, as well as governance and regulation frameworks for data privacy are lagging behind technological achievements.In this paper we identify three ethical challenges: sharing data across various early warning tools to support risk assessment. Secondly, define the challenges to be addressed by the legal frameworks for public health data sharing to unlock the potential of population-level datasets for research with no impact on citizens privacy. The third challenge lies with stricter regulation of the IT industry with regards to manipulating user data - such an initiative, GDPR, comes to force in the EU in May 2018.

Highlights

In the recent years, we have been witnessing a digital revolution in public and global health
Real-time data have been successfully used for early warning systems (De Quincey and Kostkova 2010; Szomszor et al 2010; Lampos and Cristiani 2012), the role of Twitter has been highlighted as a game changer (St Louis and Zorlu 2012), participatory surveillance crowdsourcing reporting to citizens at national and international levels (Guerrisi et al 2016), emergency and risk communication (Kostkova et al 2014) and have provided a challenging online space for public discourse of important health concerns such as vaccination (Salathé and Khandelwal 2011; Kostkova et al 2016b; Kostkova et al 2017)
A new international regulatory framework bringing a radical shift in the direction of regulation of data usage by industry giving control back to users generating the data will be introduced with the EC legislation, GDPR,4 coming to force on 25th May 2018

Summary

Introduction

We have been witnessing a digital revolution in public and global health. Web 2.0 technologies and real-time Big Data streamed and shared from social media, mobile phones and wearable/tracking devices have dramatically reshaped the delivery of healthcare, opportunities for managing personal health conditions and improving wellbeing.

Results

Conclusion