Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study

Abstract

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.

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

“…Stronger information governance featured highly, with a need for more legal sanctions for data misuse, the option to opt out, and the provision of more information on governance and security processes. The majority felt that information about the use of anonymized mobile phone data for research should be included in the terms and conditions [11].…”

“…This indicated that people are content for their anonymous CDRs to be used in research, provided that appropriate safeguards are in place. However, study participants highlighted that the terms and conditions should be clearer, as should information to phone users on data collection, sharing, and uses in research [11].…”

“…Although the majority of the studies we reviewed [5] used data from low- and middle-income countries, the researchers using the data were multinational, and MNOs operate internationally across jurisdictional boundaries. The public view on the use of CDRs for health research is an underresearched area, and our study is the only one known to date [11]. We draw upon the series of workshops we conducted with the public to incorporate their views into proposals for the ethical use of CDRs in research.…”

“…This guidance, discussions with Health Board staff, and our knowledge of working with data informed the development of the model. We then analyzed findings from a review [5], the public views [11], and the data use scenarios to propose a set of recommendations for the appropriate use of CDRs in health research.…”

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].…”