Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research

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.

Public Involvement & Engagement in the work of a data safe haven:

“…While they saw the value of this, they wanted to be better informed, including having the option to opt-out, and they were particularly concerned about the data being sold for profit. Their views were incorporated into articles on public views and the development of an ethically-founded framework for the use of mobile phone data for health research, as well as a detailed report for O 2 [19,20].…”

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

“…The second set of generic content is related to data governance (Table 2, row 2). Comprehensive and transparent governance emerged as a key point in the literature from biobanking [64,69,78,102] and appeared to apply to more novel uses of data; for example, secondary use of anonymized mobile phone data [33,65,66,80], unregulated mobile apps [81], novel data linkages [75,132], sharing genomic data [57,85,91], distributed data networks [40,109,138], or artificial intelligence [79,108,139]. The most common content elements pertain to the structure of governance, nature of secondary use [42,76], and the identity of data users, in particular if sharing with the industry [38,40,61,75,93,97,104].…”

Tracing patient PLOD by mobile phones Mitigation of epidemic risks based on patient locational open data

“…It was deemed as a straightforward approach to trace patient by analyzing the location information provided by mobile devices. However, the trace information is considered as the privacy data, and there are ethical concerns even considering public health applications [3].…”

“…Such application was first realized as a countermeasure for the epidemic of Middle East Respiratory Syndrome (MERS) in 2015, reportedly [3]. However, the trace information is considered as the privacy data, which is highly sensitive concerning individuals, and therefore, there are ethical concerns even considering public health applications [4]. Due to the privacy issue, it has been hardly possible to utilize the personal information to facilitate public health preparedness, and only a limited number of related research works have been published.…”