Abstract
Data derived from the plethora of networked digital devices hold great potential for public benefit. Among these, mobile phone call detail records (CDRs) present novel opportunities for research and are being used in a variety of health geography studies. Research suggests that the public is amenable to the use of anonymized CDRs for research; however, further work is needed to show that such data can be used appropriately. This study works toward an ethically founded data governance framework with social acceptability. Using a multifaceted approach, this study draws upon data governance arrangements in published health research using CDRs, with a consideration of public views and the public’s information expectations from mobile network operators, and data use scenarios of CDRs in health research. The findings were considered against a backdrop of legislative and regulatory requirements. CDRs can be used at various levels of data and geographic granularity and may be integrated with additional, publicly available or restricted datasets. As such, there may be a significant risk of identity disclosure, which must be mitigated with proportionate control measures. An indicative relative risk of the disclosure model is proposed to aid this process. Subsequently, a set of recommendations is presented, including the need for greater transparency, accountability, and incorporation of public views for social acceptability. This study addresses the need for greater clarity and consistency in data governance for CDRs in health research. While recognizing the need to protect commercial interests, we propose that these recommendations be used to contribute toward an ethically founded practical framework to promote the safe, socially acceptable use of CDR data for public benefit. This pattern needs to be repeated for the appropriate use of new and emerging data types from other networking devices and the wider internet of things.
Highlights
BackgroundThe number of mobile connections, including the internet of things (IoT), already exceeds the world population and is rapidly approaching 9 billion [1]
The extensive structured literature review on the use of mobile phone call detail record EC (CDR) data for health research revealed some common patterns in operational data governance regimes [5]
The recommendations can be taken forward to address this identified lack of consistency. These recommendations are in accordance with the Menlo and Organization for Economic Cooperation and Development guidance [15,16] and consolidate their principles to add specific guidance in relation to the use of CDR data for research by adding the previously nonexistent evidence base gained via a review of data governance in published research, modeling risks in data use scenarios, and importantly, incorporating public views on the social acceptability of CDR data use
Summary
BackgroundThe number of mobile connections, including the internet of things (IoT), already exceeds the world population and is rapidly approaching 9 billion [1]. It is difficult to find an adequate adjective to represent the magnitude of data being generated as we go about our daily lives. This number will only increase with further technological developments and major investments. There is much debate over the definition of public benefit We define it here as work having real-world value or practical application, with the clear potential to improve the life of individuals or wider society [3]. With such rapidly developing technologies and their societal impact, it is imperative that http://mhealth.jmir.org/2019/3/e11969/
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