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

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 amenabl...

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Detalles Bibliográficos
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/PMC6450474/
https://www.ncbi.nlm.nih.gov/pubmed/30900996
http://dx.doi.org/10.2196/11969
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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 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.
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spelling pubmed-64504742019-04-17 Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research Jones, Kerina Helen Daniels, Helen Heys, Sharon Ford, David Vincent JMIR Mhealth Uhealth Viewpoint 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. JMIR Publications 2019-03-22 /pmc/articles/PMC6450474/ /pubmed/30900996 http://dx.doi.org/10.2196/11969 Text en ©Kerina Helen Jones, Helen Daniels, Sharon Heys, David Vincent Ford. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 22.03.2019. 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 Viewpoint
Jones, Kerina Helen
Daniels, Helen
Heys, Sharon
Ford, David Vincent
Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research
title Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research
title_full Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research
title_fullStr Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research
title_full_unstemmed Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research
title_short Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research
title_sort toward an ethically founded framework for the use of mobile phone call detail records in health research
topic Viewpoint
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450474/
https://www.ncbi.nlm.nih.gov/pubmed/30900996
http://dx.doi.org/10.2196/11969
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