Ethics of mobile phone surveys to monitor non-communicable disease risk factors in low- and middle-income countries: A global stakeholder survey

Joseph Ali, Michael J. DiStefano, Iris Coates McCall, Dustin Gibson, Gulam Muhammed Al Kibria, George Pariyo, Alain B Labrique, Adnan A. Hyder

Research output: Contribution to journalArticle

Abstract

Active public health surveillance has traditionally been carried out through face-to-face household surveys or contact with providers, which can be time and resource intensive. The increasing ubiquity of mobile phones and availability of phone survey platforms provide an opportunity to explore the use of mobile phone surveys (MPS) for active disease and risk factor surveillance, including for non-communicable diseases (NCDs). Scholars are increasingly examining the ethics implications of mobile health (mHealth), but few have focused on the ethics of mHealth in low- and middle-income countries (LMICs), and even fewer on mHealth for active surveillance. Given that little is known about ethics-related attitudes and practices of stakeholders invested in the conduct and oversight of mHealth in LMICs, we undertook a cross-sectional global stakeholder survey of ethics-related issues implicated by active observational MPS, with a contextual frame of monitoring NCD risk factors in LMICs. We analyse these findings with an organising focus on ethical issues that arise before, during and after conduct of an MPS including defining the activity; anticipating harms and benefits; obtaining consent; data ownership, access, and use; and ensuring sustainability. Finally, we present a set of empirical, conceptual, and normative considerations that arise from this analysis and merit further consideration.

Original languageEnglish (US)
JournalGlobal Public Health
DOIs
StateAccepted/In press - Jan 1 2019

Fingerprint

Cell Phones
Ethics
Telemedicine
Public Health Surveillance
Ownership
Surveys and Questionnaires

Keywords

  • Bioethics
  • digital health
  • mhealth
  • public health
  • surveillance

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Ethics of mobile phone surveys to monitor non-communicable disease risk factors in low- and middle-income countries : A global stakeholder survey. / Ali, Joseph; DiStefano, Michael J.; Coates McCall, Iris; Gibson, Dustin; Al Kibria, Gulam Muhammed; Pariyo, George; Labrique, Alain B; Hyder, Adnan A.

In: Global Public Health, 01.01.2019.

Research output: Contribution to journalArticle

@article{9d65c3198b034247b964488ee628f939,
title = "Ethics of mobile phone surveys to monitor non-communicable disease risk factors in low- and middle-income countries: A global stakeholder survey",
abstract = "Active public health surveillance has traditionally been carried out through face-to-face household surveys or contact with providers, which can be time and resource intensive. The increasing ubiquity of mobile phones and availability of phone survey platforms provide an opportunity to explore the use of mobile phone surveys (MPS) for active disease and risk factor surveillance, including for non-communicable diseases (NCDs). Scholars are increasingly examining the ethics implications of mobile health (mHealth), but few have focused on the ethics of mHealth in low- and middle-income countries (LMICs), and even fewer on mHealth for active surveillance. Given that little is known about ethics-related attitudes and practices of stakeholders invested in the conduct and oversight of mHealth in LMICs, we undertook a cross-sectional global stakeholder survey of ethics-related issues implicated by active observational MPS, with a contextual frame of monitoring NCD risk factors in LMICs. We analyse these findings with an organising focus on ethical issues that arise before, during and after conduct of an MPS including defining the activity; anticipating harms and benefits; obtaining consent; data ownership, access, and use; and ensuring sustainability. Finally, we present a set of empirical, conceptual, and normative considerations that arise from this analysis and merit further consideration.",
keywords = "Bioethics, digital health, mhealth, public health, surveillance",
author = "Joseph Ali and DiStefano, {Michael J.} and {Coates McCall}, Iris and Dustin Gibson and {Al Kibria}, {Gulam Muhammed} and George Pariyo and Labrique, {Alain B} and Hyder, {Adnan A.}",
year = "2019",
month = "1",
day = "1",
doi = "10.1080/17441692.2019.1566482",
language = "English (US)",
journal = "Global Public Health",
issn = "1744-1692",
publisher = "Routledge",

}

TY - JOUR

T1 - Ethics of mobile phone surveys to monitor non-communicable disease risk factors in low- and middle-income countries

T2 - A global stakeholder survey

AU - Ali, Joseph

AU - DiStefano, Michael J.

AU - Coates McCall, Iris

AU - Gibson, Dustin

AU - Al Kibria, Gulam Muhammed

AU - Pariyo, George

AU - Labrique, Alain B

AU - Hyder, Adnan A.

PY - 2019/1/1

Y1 - 2019/1/1

N2 - Active public health surveillance has traditionally been carried out through face-to-face household surveys or contact with providers, which can be time and resource intensive. The increasing ubiquity of mobile phones and availability of phone survey platforms provide an opportunity to explore the use of mobile phone surveys (MPS) for active disease and risk factor surveillance, including for non-communicable diseases (NCDs). Scholars are increasingly examining the ethics implications of mobile health (mHealth), but few have focused on the ethics of mHealth in low- and middle-income countries (LMICs), and even fewer on mHealth for active surveillance. Given that little is known about ethics-related attitudes and practices of stakeholders invested in the conduct and oversight of mHealth in LMICs, we undertook a cross-sectional global stakeholder survey of ethics-related issues implicated by active observational MPS, with a contextual frame of monitoring NCD risk factors in LMICs. We analyse these findings with an organising focus on ethical issues that arise before, during and after conduct of an MPS including defining the activity; anticipating harms and benefits; obtaining consent; data ownership, access, and use; and ensuring sustainability. Finally, we present a set of empirical, conceptual, and normative considerations that arise from this analysis and merit further consideration.

AB - Active public health surveillance has traditionally been carried out through face-to-face household surveys or contact with providers, which can be time and resource intensive. The increasing ubiquity of mobile phones and availability of phone survey platforms provide an opportunity to explore the use of mobile phone surveys (MPS) for active disease and risk factor surveillance, including for non-communicable diseases (NCDs). Scholars are increasingly examining the ethics implications of mobile health (mHealth), but few have focused on the ethics of mHealth in low- and middle-income countries (LMICs), and even fewer on mHealth for active surveillance. Given that little is known about ethics-related attitudes and practices of stakeholders invested in the conduct and oversight of mHealth in LMICs, we undertook a cross-sectional global stakeholder survey of ethics-related issues implicated by active observational MPS, with a contextual frame of monitoring NCD risk factors in LMICs. We analyse these findings with an organising focus on ethical issues that arise before, during and after conduct of an MPS including defining the activity; anticipating harms and benefits; obtaining consent; data ownership, access, and use; and ensuring sustainability. Finally, we present a set of empirical, conceptual, and normative considerations that arise from this analysis and merit further consideration.

KW - Bioethics

KW - digital health

KW - mhealth

KW - public health

KW - surveillance

UR - http://www.scopus.com/inward/record.url?scp=85059961950&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85059961950&partnerID=8YFLogxK

U2 - 10.1080/17441692.2019.1566482

DO - 10.1080/17441692.2019.1566482

M3 - Article

C2 - 30628548

AN - SCOPUS:85059961950

JO - Global Public Health

JF - Global Public Health

SN - 1744-1692

ER -