JMIR Publications

ABSTRACT

Background:

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 geographic studies. Research suggests the public are amenable to anonymised CDRs being used for research; however, further work is needed to show that such data can be used appropriately.

Objective:

This study works towards an ethically-founded data governance framework that meets with social acceptability.

Methods:

Using a multi-faceted approach this study draws upon: data governance arrangements in published health research using CDRs; a consideration of public views and their 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.

Results:

CDRs can 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 disclosure risk model is proposed to aid this process. Subsequently, a set of overarching recommendations is presented, including the need for greater transparency, accountability, and the incorporation of public views for social acceptability.

Conclusions:

This study addresses the need for greater clarity and consistency in data governance for CDRs in health research. Whilst recognising the need to protect commercial interests, it is proposed that the recommendations are used to contribute towards 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 networked devices and the wider internet of things.