Accepted for/Published in: JMIR mHealth and uHealth
Date Submitted: Jul 30, 2018
Open Peer Review Period: Aug 3, 2018 - Sep 13, 2018
Date Accepted: Oct 3, 2018
(closed for review but you can still tweet)
Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study
ABSTRACT
Background:
Mobile 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.
Objective:
This study aimed to explore the public views on the use of call detail records in health research.
Methods:
Views on using CDRs in health research were gained via a series of 3 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.
Results:
At 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, a 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 provided 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.
Conclusions:
This 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.
Citation
Per the author's request the PDF is not available.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.