scholarly journals Towards an ethically-founded framework for the use of mobile phone CDRs in health research

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Kerina Jones ◽  
Helen Daniels ◽  
Sharon Heys ◽  
David Ford
Keyword(s):  
Mobile Phone ◽  
Health Research ◽  
Mobile Network ◽  
Research Literature ◽  
Social Acceptability ◽  
Data Governance ◽  
Middle Income ◽  
The Public ◽  
Middle Income Countries ◽  
Public Views

IntroductionCall Detail Records (CDRs) are collected by mobile network operators in the course of service provision, and they are increasingly being used in health research. It has been identified that further work is needed to show that CDRs can be used within an ethically-founded framework that meets with social acceptability. Objectives and ApproachThe published research literature was reviewed to identify data governance arrangements, challenges and potential opportunities for the greater use of the location element of CDRs in health research. A series of 3 workshops with members of the public (N=61) were conducted to gain views on the use of CDRs for health research. Data use scenarios of CDRs for health research were constructed to consider risk and mitigating controls. The findings were drawn together against a backdrop of legislative and regulatory requirements. ResultsThe majority of published studies focused on low and middle income countries, often modelling the transmission of infectious diseases, and population movement following natural disasters. CDRs were used in anonymised or aggregated form, and gaining regulatory approvals varied with data provider and by jurisdiction. Only 2 people knew CDR data was being used for health research, but ultimately, most (N=49) were happy for their anonymised CDRs to be used, provided that safeguards were in place. Recommendations towards an ethically-founded framework for using CDR locations in health research are proposed, including the need for greater transparency, accountability, and the incorporation of public views for social acceptability. Conclusion/ImplicationsDespite limitations inherent in the data, mobile phone CDRs have been used successfully in health research. People are generally amenable to the use of anonymised CDR data, but they want to be properly informed. The proposed recommendations should be taken into consideration to contribute towards a consistent, socially-acceptable, ethically founded framework.

scholarly journals Toward an Ethically Founded Framework for the Use of Mobile Phone Call Detail Records in Health Research (Preprint)

2018 ◽  
Author(s):  
Kerina Helen Jones ◽  
Helen Daniels ◽  
Sharon Heys ◽  
David Vincent Ford
Keyword(s):  
Mobile Phone ◽  
Health Research ◽  
Significant Risk ◽  
Control Measures ◽  
Phone Call ◽  
Social Acceptability ◽  
Data Governance ◽  
Public Benefit ◽  
Public Views ◽  
Call Detail Records

UNSTRUCTURED 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.

scholarly journals Public Views on Using Mobile Phone Call Detail Records in Health Research: Qualitative Study (Preprint)

2018 ◽  
Author(s):  
Kerina Helen Jones ◽  
Helen Daniels ◽  
Sharon Heys ◽  
David Vincent Ford
Keyword(s):  
Mobile Phone ◽  
Disease Transmission ◽  
Health Research ◽  
Phone Call ◽  
Data Governance ◽  
Multinational Organizations ◽  
Initial Questionnaire ◽  
Final Questionnaire ◽  
Public Views ◽  
Call Detail Records

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.

Better Late Than Never?! Five Compelling Reasons for Putting Physical Activity in Low- and Middle-Income Countries High Up on the Public Health Research Agenda

2021 ◽  
pp. 1-2
Author(s):  
Katja Siefken ◽  
Andrea Varela Ramirez ◽  
Temo Waqanivalu ◽  
Nico Schulenkorf
Keyword(s):  
Public Health ◽  
Physical Activity ◽  
Health Research ◽  
Research Agenda ◽  
Public Health Research ◽  
Noncommunicable Diseases ◽  
Middle Income ◽  
The Public ◽  
Middle Income Countries ◽  
Low And Middle Income

Since 2020, the world has been navigating an epidemiologic transition with both infectious diseases (COVID-19) and noncommunicable diseases intertwined in complex and diverse ways. In fact, the pandemics of physical inactivity, noncommunicable diseases, and COVID-19 coincide in a tragically impactful ménage à trois with their detrimental long-term health consequences yet to be determined. We know that people in low- and middle-income countries not only have the highest risk of developing chronic diseases, they also develop the diseases at a younger age, they suffer longer, and they die earlier than people in high-income countries. This commentary features 5 compelling reasons for putting physical activity in low- and middle-income countries high up on the public health research agenda and calls for more commitment to inclusive and context-specific public health practices that are paired with locally relevant promotion and facilitation of PA practice, research, and policymaking.

Health research capacity in Nepal: Analysis of the trend and the role of local researchers

2021 ◽  
pp. 004947552098277
Author(s):  
Madhu Kharel ◽  
Alpha Pokharel ◽  
Krishna P Sapkota ◽  
Prasant V Shahi ◽  
Pratisha Shakya ◽  
...  
Keyword(s):  
Health Research ◽  
Fold Increase ◽  
Research Capacity ◽  
Rapid Review ◽  
Evidence Based ◽  
Middle Income ◽  
Middle Income Countries ◽  
Health Related ◽  
Evidence Based Decision Making

Evidence-based decision-making is less common in low- and middle-income countries where the research capacity remains low. Nepal, a lower-middle-income country in Asia, is not an exception. We conducted a rapid review to identify the trend of health research in Nepal and found more than seven-fold increase in the number of published health-related articles between 2000 and 2018. The proportion of articles with Nepalese researchers as the first authors has also risen over the years, though they are still only in two-thirds of the articles in 2018.

scholarly journals Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

Laws ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 6 ◽  
Author(s):  
Mark J. Taylor ◽  
Tess Whitton
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Personal Health ◽  
Positive Contribution ◽  
Data Governance ◽  
The Public ◽  
Individual Control ◽  
Data Protection Law

The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

scholarly journals Status of drowning in Nepal: A study of central police data

F1000Research ◽  
2018 ◽  
Vol 7 ◽  
pp. 576
Author(s):  
Bhagabati Sedain ◽  
Puspa Raj Pant
Keyword(s):  
Descriptive Analysis ◽  
Epidemiological Studies ◽  
Water Bodies ◽  
Limited Data ◽  
Middle Income ◽  
The Public ◽  
Middle Income Countries ◽  
Police Data ◽  
The Status ◽  
Data Source

Background:  Drowning is a serious and mostly preventable injury-related cause of death. Low-and-middle income countries represent 90% of total drowning deaths worldwide. There is lack of epidemiological studies of drowning in Nepal. The aim of this paper is to describe the status of drowning in Nepal. Methods: Cases of drowning, occurring between January 2013 and December 2015 were extracted from the Daily Incident Recording System of Nepal Police. Variables on age, sex of the deceased, types of water bodies, places, season when drowning occurred and activities of deceased were extracted and descriptive analysis was done. Results: A total of 1,507 drowning cases were recorded over a 3 year period. The rate of drowning was 1.9 per 100,000 (2.95 for males and 0.92 for females). Majority of drowning occurred among males (76%) and more than half were (53%) under 20 years of age. Mostly drowning occurred in rivers (natural water bodies). The findings provide strong indication that drowning occurs throughout the year in Nepal. Children were highly vulnerable to drowning. The magnitude of drowning was found to be lower than estimated by global burden of disease (GBD) study. Conclusion: The burden of drowning in Nepal is considerable, but mostly unknown to the public. Despite only having access to a limited data source, this study provides useful evidence that comprehensive research in Nepal is needed urgently.

scholarly journals Identification of Bacillus Anthracis, Brucella Spp., and Coxiella Burnetii DNA Signatures From Bushmeat

2021 ◽  
Author(s):  
Robab Katani ◽  
Megan Schilling ◽  
Beatus Lyimo ◽  
Ernest Eblate ◽  
Andimile Martin ◽  
...  
Keyword(s):  
Bacillus Anthracis ◽  
Coxiella Burnetii ◽  
Wildlife Diseases ◽  
Middle Income ◽  
The Public ◽  
Middle Income Countries ◽  
Close Proximity ◽  
Disease Risks ◽  
Potential Risks ◽  
Dry Seasons

Abstract Meat from wildlife species (bushmeat) represents a major source of dietary protein in low- and middle-income countries where humans and wildlife live in close proximity. Despite the occurrence of zoonotic pathogens in wildlife, their prevalence in bushmeat remains unknown. To assess the risk of exposure to major pathogens in bushmeat, a total of 3,784 samples were collected from three major regions in Tanzania during both rainy and dry seasons, both fresh and processed and screened by real-time PCR for the presence of DNA signatures of Bacillus anthracis, Brucella spp and Coxiella burnetii (Coxiella). The analysis identified DNA signatures of B. anthracis (0.48%), Brucella (0.9%), and Coxiella (0.66%) in a total of 77 samples. Highest prevalence rates of B. anthracis, Brucella, and Coxiella were observed in wildebeest, dik-dik, and impala, respectively. Fresh samples, those collected during the rainy season, and samples from Selous or the Serengeti had a greater relative risk of being positive. Microbiome characterization identified Firmicutes and Proteobacteria as the most abundant phyla. The results highlight and define potential risks of exposure to endemic wildlife diseases from bushmeat and the need for future investigations to address the public health and emerging infectious disease risks associated with bushmeat harvesting, trade, and consumption.

scholarly journals Strengthening Mentoring in Low- and Middle-Income Countries to Advance Global Health Research: An Overview

2019 ◽  
Vol 100 (1_Suppl) ◽  
pp. 3-8 ◽  
Author(s):  
Andres G. Lescano ◽  
Craig R. Cohen ◽  
Tony Raj ◽  
Laetitia Rispel ◽  
Patricia J. Garcia ◽  
...  
Keyword(s):  
Global Health ◽  
Health Research ◽  
Global Health Research ◽  
Middle Income ◽  
Middle Income Countries ◽  
Low And Middle Income
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