Dataset Information

Challenges and Potential Opportunities of Mobile Phone Call Detail Records in Health Research: Review.

ABSTRACT:

Background

Call 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.

Objective

The 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.

Methods

A 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.

Results

The 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.

Conclusions

Despite 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.

SUBMITTER: Jones KH

PROVIDER: S-EPMC6072975 | biostudies-literature |

REPOSITORIES: biostudies-literature

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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.