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

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...

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Autores principales: Jones, Kerina Helen, Daniels, Helen, Heys, Sharon, Ford, David Vincent
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6352010/
https://www.ncbi.nlm.nih.gov/pubmed/30664467
http://dx.doi.org/10.2196/11730
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author Jones, Kerina Helen
Daniels, Helen
Heys, Sharon
Ford, David Vincent
author_facet Jones, Kerina Helen
Daniels, Helen
Heys, Sharon
Ford, David Vincent
author_sort Jones, Kerina Helen
collection PubMed
description 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 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 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. 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, 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. 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.
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spelling pubmed-63520102019-02-22 Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study Jones, Kerina Helen Daniels, Helen Heys, Sharon Ford, David Vincent JMIR Mhealth Uhealth Original Paper 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 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 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. 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, 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. 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. JMIR Publications 2019-01-16 /pmc/articles/PMC6352010/ /pubmed/30664467 http://dx.doi.org/10.2196/11730 Text en ©Kerina Helen Jones, Helen Daniels, Sharon Heys, David Vincent Ford. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 16.01.2019. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mhealth and uhealth, is properly cited. The complete bibliographic information, a link to the original publication on http://mhealth.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Original Paper
Jones, Kerina Helen
Daniels, Helen
Heys, Sharon
Ford, David Vincent
Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study
title Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study
title_full Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study
title_fullStr Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study
title_full_unstemmed Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study
title_short Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study
title_sort public views on using mobile phone call detail records in health research: qualitative study
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6352010/
https://www.ncbi.nlm.nih.gov/pubmed/30664467
http://dx.doi.org/10.2196/11730
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