Dataset Information

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.

SUBMITTER: Jones KH

PROVIDER: S-EPMC6450474 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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

Jones Kerina Helen KH Daniels Helen H Heys Sharon S Ford David Vincent DV

JMIR mHealth and uHealth 20190322 3

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 w ...[more]

PMID: 30900996

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Project description:BackgroundCall detail records (CDRs) are collected by mobile network operators in the course of providing their service. CDRs are increasingly being used in research along with other forms of big data and represent an emerging data type with potential for public good. Many jurisdictions have infrastructures for health data research that could benefit from the integration of CDRs with health data.ObjectiveThe objective of this study was to review how CDRs have been used in health research and to identify challenges and potential opportunities for their wider use in conjunction with health data.MethodsA literature review was conducted using structured search terms making use of major search engines. Initially, 4066 items were identified. Following screening, 46 full text articles were included in the qualitative synthesis. Information extracted included research topic area, population of study, datasets used, information governance and ethical considerations, study findings, and data limitations.ResultsThe majority of published studies were focused on low-income and middle-income countries. Making use of the location element in CDRs, studies often modeled the transmission of infectious diseases or estimated population movement following natural disasters with a view to implementing interventions. CDRs were used in anonymized or aggregated form, and the process of gaining regulatory approvals varied with data provider and by jurisdiction. None included public views on the use of CDRs in health research.ConclusionsDespite various challenges and limitations, anonymized mobile phone CDRs have been used successfully in health research. The use of aggregated data is a safeguard but also a further limitation. Greater opportunities could be gained if validated anonymized CDRs were integrated with routine health records at an individual level, provided that permissions and safeguards could be put in place. Further work is needed, including gaining public views, to develop an ethically founded framework for the use of CDRs in health research.

Project description:BackgroundMobile phone call detail records (CDRs) are increasingly being used in health research. The location element in CDRs is used in various health geographic studies, for example, to track population movement and infectious disease transmission. Vast volumes of CDRs are held by multinational organizations, which may make them available for research under various data governance regimes. However, there is an identified lack of public engagement on using CDRs for health research to contribute to an ethically founded framework.ObjectiveThis study aimed to explore public views on the use of call detail records in health research.MethodsViews on using CDRs in health research were gained via a series of three public workshops (N=61) informed by a pilot workshop of 25 people. The workshops included an initial questionnaire to gauge participants' prior views, discussion on health research using CDRs, and a final questionnaire to record workshop outcome views. The resulting data were analyzed for frequencies and emerging themes.ResultsAt the outset, most participants (66%, 40/61) knew that location data were collected by operators, but only 3% (2/61) knew they were being used for health research. Initially, the majority of the participants (62%, 38/61) was content for their anonymous CDRs to be used, and this increased (80%, 49/61) after the discussion explained that safeguards were in place. Participants highlighted that terms and conditions should be clearer, as should information to phone users on data collection, privacy safeguards, sharing, and uses in research.ConclusionsThis is the first known study exploring public views of using mobile phone CDRs in health research. It revealed a lack of knowledge among the public on uses of CDRs and indicated that people are generally amenable to the use of anonymized data for research, but they want to be properly informed and safeguarded. We recommend that public views be incorporated into an ethically founded framework for the use of CDRs in health research to promote awareness and social acceptability in data use.

Project description:BackgroundThe exponential scale and pace of real-time data generated from mobile phones present opportunities for new insights and challenges across multiple sectors, including health care delivery and public health research. However, little attention has been given to the new ethical, social, and legal concerns related to using these mobile technologies and the data they generate in Africa.ObjectiveThe objective of this scoping review was to explore the ethical and related concerns that arise from the use of data from call detail records and mobile technology interventions for public health in the context of East Africa.MethodsWe searched the PubMed database for published studies describing ethical challenges while using mobile technologies and related data in public health research between 2000 and 2020. A predefined search strategy was used as inclusion criteria with search terms such as "East Africa," "mHealth," "mobile phone data," "public health," "ethics," or "privacy." We screened studies using prespecified eligibility criteria through a two-stage process by two independent reviewers. Studies were included if they were (1) related to mobile technology use and health, (2) published in English from 2000 to 2020, (3) available in full text, and (4) conducted in the East African region. We excluded articles that (1) were conference proceedings, (2) studies presenting an abstract only, (3) systematic and literature reviews, (4) research protocols, and (5) reports of mobile technology in animal subjects. We followed the five stages of a published framework for scoping reviews recommended by Arksey and O'Malley. Data extracted included title, publication year, target population, geographic region, setting, and relevance to mobile health (mHealth) and ethics. Additionally, we used the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews checklist to guide the presentation of this scoping review. The rationale for focusing on the five countries in East Africa was their geographic proximity, which lends itself to similarities in technology infrastructure development.ResultsOf the 94 studies identified from PubMed, 33 met the review inclusion criteria for the final scoping review. The 33 articles retained in the final scoping review represent studies conducted in three out of five East African countries: 14 (42%) from Uganda, 13 (39%) from Kenya, and 5 (16%) from Tanzania. Three main categories of concerns related to the use of mHealth technologies and mobile phone data can be conceptualized as (1) ethical issues (adequate informed consent, privacy and confidentiality, data security and protection), (2) sociocultural issues, and (3) regulatory/legal issues.ConclusionsThis scoping review identified major cross-cutting ethical, regulatory, and sociocultural concerns related to using data from mobile technologies in the East African region. A comprehensive framework that accounts for the critical concerns raised would be valuable for guiding the safe use of mobile technology data for public health research purposes.

Project description:BackgroundAs successful malaria control programmes re-orientate towards elimination, the identification of transmission foci, targeting of attack measures to high-risk areas and management of importation risk become high priorities. When resources are limited and transmission is varying seasonally, approaches that can rapidly prioritize areas for surveillance and control can be valuable, and the most appropriate attack measure for a particular location is likely to differ depending on whether it exports or imports malaria infections.Methods/resultsHere, using the example of Namibia, a method for targeting of interventions using surveillance data, satellite imagery, and mobile phone call records to support elimination planning is described. One year of aggregated movement patterns for over a million people across Namibia are analyzed, and linked with case-based risk maps built on satellite imagery. By combining case-data and movement, the way human population movements connect transmission risk areas is demonstrated. Communities that were strongly connected by relatively higher levels of movement were then identified, and net export and import of travellers and infection risks by region were quantified. These maps can aid the design of targeted interventions to maximally reduce the number of cases exported to other regions while employing appropriate interventions to manage risk in places that import them.ConclusionsThe approaches presented can be rapidly updated and used to identify where active surveillance for both local and imported cases should be increased, which regions would benefit from coordinating efforts, and how spatially progressive elimination plans can be designed. With improvements in surveillance systems linked to improved diagnosis of malaria, detailed satellite imagery being readily available and mobile phone usage data continually being collected by network providers, the potential exists to make operational use of such valuable, complimentary and contemporary datasets on an ongoing basis in infectious disease control and elimination.

Dataset Information

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

Publications

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

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