Electronic data management for vaccine trials in low resource settings: Upgrades, scalability and impact of ODK

ABSTRACTBackgroundODK provides software and standards that are popular solutions for off-grid electronic data collection and has substantial code overlap and interoperability with a number of related software products including CommCare, Enketo, Ona, SurveyCTO and KoBoToolbox. In combination with the use of statistical analysis software such as R, these tools provide fully open-source options for off-grid use in public health data collection, management, analysis and reporting. During the 2018-2020 Ebola epidemic in the North Kivu & Ituri regions of Democratic Republic of Congo, we leveraged ODK and other tools to support the DRC Ministère de la Santé RDC and World Health Organization in their efforts to administer an experimental vaccine (VSV-Zebov-GP) as part of their strategy to control the transmission of infection.MethodNew functions were developed to facilitate the use of ODK, Enketo and R in large scale data collection, aggregation, monitoring and near-real-time analysis during clinical research in health emergencies. We present open-source enhancements to ODK that include a built-in audit-trail, a framework and companion app for biometric registration of ISO/IEC 19794-2 fingerprint templates, enhanced performance features, better scalability for studies featuring millions of data form submissions, increased options for parallelization of research projects, and pipelines for automated management and analysis of data. We also developed novel encryption protocols for enhanced web-form security in Enketo.ResultsAgainst the backdrop of a complex and challenging epidemic response, our enhanced platform of open tools was used to collect and manage data from more than 280,000 eligible study participants who received VSV-Zebov-GP under informed consent. These data were used to determine whether the VSV-Zebov-GP was safe and effective and to guide daily field operations.ConclusionsWe present open-source developments that make electronic data management during clinical research and health emergencies more viable and robust. These developments will also enhance and expand the functionality of a diverse range of data collection platforms (Ona, KoBoToolbox etc.) that are based on the ODK software and standards.FundingThis research is funded by the Department of Health and Social Care using UK Aid funding and is managed by the NIHR (PR-OD-1017-20001). The views expressed in this publication are those of the authors and not necessarily those of the Department of Health and Social Care.

Download Full-text

Electronic Data Management in Public Health and Humanitarian Crises. Upgrades, Scalability and Impact of ODK

10.21203/rs.3.rs-52854/v1 ◽

2020 ◽

Author(s):

Michael Marks ◽

Sham Lal ◽

Hannah Brindle ◽

Pierre-Stéphane Gsell ◽

Matthew MacGregor ◽

...

Keyword(s):

Public Health ◽

Data Collection ◽

Clinical Research ◽

Data Management ◽

Open Source ◽

Large Scale ◽

World Health ◽

Electronic Data ◽

Diverse Range ◽

Health And Social Care

Abstract BackgroundODK provides software and standards that are popular solutions for off-grid electronic data collection and are the basis of related products like CommCare, Enketo, Ona, SurveyCTO and KoBoToolbox. In combination with the use of statistical analysis software such as R, these tools provide fully open-source options for off-grid use in public health data collection, management, analysis and reporting.ResultsNew functions were developed to facilitate the use of ODK, Enketo and R in large scale data collection, aggregation, monitoring and near-real-time analysis during clinical research in health emergencies. We present open-source enhancements to ODK that include a built-in audit-trail, a framework and companion app for biometric registration of ISO/IEC 19794-2 fingerprint templates, enhanced performance features, better scalability for studies featuring millions of data form submissions, increased options for parallelisation of research projects, and pipelines for automated management and analysis of data. We also developed novel encryption protocols for enhanced web-form security in Enketo. During the 2018-2020 Ebola epidemic in the North Kivu & Ituri regions of Democratic Republic of Congo, ODK, Enketo and R were leveraged to support the DRC Ministère de la Santé RDC and World Health Organization in their efforts to administer an experimental vaccine (VSV-Zebov-GP) as part of their strategy to control the transmission of infection. Against the backdrop of a complex and challenging epidemic response, our enhanced platform of open tools was used to collect and manage data from more than 280,000 eligible study participants who received VSV under informed consent. These data were used to determine whether the VSV-Zebov-GP was safe and effective and to guide daily field operations.ConclusionsWe present open source developments that make electronic data management during clinical research and health emergencies more viable and robust. These developments will also enhance and expand the functionality of a diverse range of data collection platforms (Ona, KoBoToolbox etc.) that are based on the ODK software and standards.FundingThis research is funded by the Department of Health and Social Care using UK Aid funding and is managed by the NIHR (PR-OD-1017-20001).

Download Full-text

Electronic Data Management for Vaccine Trials in Low Resource Settings: Upgrades, Scalability, and Impact of ODK

Frontiers in Public Health ◽

10.3389/fpubh.2021.665584 ◽

2021 ◽

Vol 9 ◽

Author(s):

Michael Marks ◽

Sham Lal ◽

Hannah Brindle ◽

Pierre-Stéphane Gsell ◽

Matthew MacGregor ◽

...

Keyword(s):

Data Collection ◽

Clinical Research ◽

Data Management ◽

Open Source ◽

Large Scale ◽

Democratic Republic Of Congo ◽

World Health ◽

Electronic Data ◽

Diverse Range ◽

Electronic Data Collection

Background: ODK provides software and standards that are popular solutions for off-grid electronic data collection and has substantial code overlap and interoperability with a number of related software products including CommCare, Enketo, Ona, SurveyCTO, and KoBoToolbox. These tools provide open-source options for off-grid use in public health data collection, management, analysis, and reporting. During the 2018–2020 Ebola epidemic in the North Kivu and Ituri regions of Democratic Republic of Congo, we used these tools to support the DRC Ministère de la Santé RDC and World Health Organization in their efforts to administer an experimental vaccine (VSV-Zebov-GP) as part of their strategy to control the transmission of infection.Method: New functions were developed to facilitate the use of ODK, Enketo and R in large scale data collection, aggregation, monitoring, and near-real-time analysis during clinical research in health emergencies. We present enhancements to ODK that include a built-in audit-trail, a framework and companion app for biometric registration of ISO/IEC 19794-2 fingerprint templates, enhanced performance features, better scalability for studies featuring millions of data form submissions, increased options for parallelization of research projects, and pipelines for automated management and analysis of data. We also developed novel encryption protocols for enhanced web-form security in Enketo.Results: Against the backdrop of a complex and challenging epidemic response, our enhanced platform of open tools was used to collect and manage data from more than 280,000 eligible study participants who received VSV-Zebov-GP under informed consent. These data were used to determine whether the VSV-Zebov-GP was safe and effective and to guide daily field operations.Conclusions: We present open-source developments that make electronic data management during clinical research and health emergencies more viable and robust. These developments will also enhance and expand the functionality of a diverse range of data collection platforms that are based on the ODK software and standards.

Download Full-text

Maternal mortality in the developing world: why do mothers really die?

Obstetric Medicine ◽

10.1258/om.2008.080019 ◽

2008 ◽

Vol 1 (1) ◽

pp. 2-6 ◽

Cited By ~ 18

Author(s):

Gwyneth Lewis

Keyword(s):

Maternal Mortality ◽

Death Certificate ◽

Social Care ◽

World Health ◽

Depth Information ◽

Health Organizations ◽

Political Will ◽

Cultural Attitudes ◽

Health And Social Care ◽

The World

Every year some eight million women suffer preventable or remediable pregnancy-related complications and over half a million will die unnecessarily. Most of these deaths could be averted at little or no extra cost, even where resources are limited, but in order to take action, and develop and implement changes to maternity services to save mothers and newborns lives, a change in cultural attitudes and political will, as well as improvements in the provision of health and social care, is required. Further, to aid programme planners, more in-depth information than that which may already be available through national statistics on maternal mortality rates or death certificate data is urgently needed. What is required is an in-depth understanding of the clinical, social, cultural or any other underlying factors which lead to mothers' deaths. Such information can be obtained by using any of the five methodologies outlined in the World Health Organizations programme and philosophy for maternal death or disability reviews, ‘Beyond the Numbers’, briefly described here and which are now being introduced in a number of countries around the world.

Download Full-text

Introducing the Care Certificate Evaluation: Innovative practice

Dementia ◽

10.1177/1471301217723498 ◽

2017 ◽

Vol 19 (2) ◽

pp. 512-517

Author(s):

Elaine Argyle ◽

Louise Thomson ◽

Antony Arthur ◽

Jill Maben ◽

Justine Schneider ◽

...

Keyword(s):

Staff Development ◽

Social Care ◽

Policy Research ◽

Research Programme ◽

Direct Care ◽

Care Staff ◽

Care Provision ◽

Front Line ◽

Department Of Health ◽

Health And Social Care

Although investment in staff development is a prerequisite for high-quality and innovative care, the training needs of front line care staff involved in direct care have often been neglected, particularly within dementia care provision. The Care Certificate, which was fully launched in England in April 2015, has aimed to redress this neglect by providing a consistent and transferable approach to the training of the front line health and social care workforce. This article describes the early stages of an 18-month evaluation of the Care Certificate and its implementation funded by the Department of Health Policy Research Programme.

Download Full-text

Reducing the Risk of Cognitive Decline and Dementia: WHO Recommendations

Frontiers in Neurology ◽

10.3389/fneur.2021.765584 ◽

2022 ◽

Vol 12 ◽

Author(s):

Neerja Chowdhary ◽

Corrado Barbui ◽

Kaarin J. Anstey ◽

Miia Kivipelto ◽

Mariagnese Barbera ◽

...

Keyword(s):

Cognitive Decline ◽

Risk Reduction ◽

Social Care ◽

Guideline Development ◽

Action Plan ◽

World Health Organisation ◽

World Health ◽

Public Health Response ◽

Health And Social Care ◽

The World

With population ageing worldwide, dementia poses one of the greatest global challenges for health and social care in the 21st century. In 2019, around 55 million people were affected by dementia, with the majority living in low- and middle-income countries. Dementia leads to increased costs for governments, communities, families and individuals. Dementia is overwhelming for the family and caregivers of the person with dementia, who are the cornerstone of care and support systems throughout the world. To assist countries in addressing the global burden of dementia, the World Health Organisation (WHO) developed the Global Action Plan on the Public Health Response to Dementia 2017–2025. It proposes actions to be taken by governments, civil society, and other global and regional partners across seven action areas, one of which is dementia risk reduction. This paper is based on WHO Guidelines on risk reduction of cognitive decline and dementia and presents recommendations on evidence-based, multisectoral interventions for reducing dementia risks, considerations for their implementation and policy actions. These global evidence-informed recommendations were developed by WHO, following a rigorous guideline development methodology and involved a panel of academicians and clinicians with multidisciplinary expertise and representing geographical diversity. The recommendations are considered under three broad headings: lifestyle and behaviour interventions, interventions for physical health conditions and specific interventions. By supporting health and social care professionals, particularly by improving their capacity to provide gender and culturally appropriate interventions to the general population, the risk of developing dementia can be potentially reduced, or its progression delayed.

Download Full-text

Useful links

Suicide Prevention ◽

10.1093/med/9780198791607.003.0017 ◽

2019 ◽

pp. 147-150

Author(s):

Navneet Kapur ◽

Robert Goldney

Keyword(s):

World Health Organization ◽

Suicide Prevention ◽

Social Care ◽

International Association ◽

World Health ◽

Major Health ◽

Health And Social Care ◽

The World ◽

Health Organization ◽

International Academy

With the increasing recognition of suicide as a major health and social care issue, many suicide prevention organisations have been established locally, nationally and internationally. This chapter includes a number of links to the most prominent of these, but the list is indicative rather than exhaustive. These include the International Association for Suicide Prevention, the International Academy of Suicide Research, the Samaritans, the World Health Organization, and national suicide prevention organizations from across the world.

Download Full-text

Open Source Paradigm: A Synopsis of The Cathedral and the Bazaar for Health and Social Care

Journal of Innovation in Health Informatics ◽

10.14236/jhi.v23i2.866 ◽

2016 ◽

Vol 23 (2) ◽

pp. 488

Author(s):

Tim Benson

Keyword(s):

Open Source ◽

Open Source Software ◽

Social Care ◽

Source Code ◽

Comprehensive Description ◽

The Third ◽

It Impacts ◽

Health And Social Care ◽

Software Engineers ◽

Closed Source

Background: Open source software (OSS) is becoming more fashionable in health and social care, although the ideas are not new. However progress has been slower than many had expected.Objective: The purpose is to summarise the Free/Libre Open Source Software (FLOSS) paradigm in terms of what it is, how it impacts users and software engineers and how it can work as a business model in health and social care sectors.Method: Much of this paper is a synopsis of Eric Raymond’s seminal book The Cathedral and the Bazaar, which was the first comprehensive description of the open source ecosystem, set out in three long essays. Direct quotes from the book are used liberally, without reference to specific passages. The first part contrasts open and closed source approaches to software development and support. The second part describes the culture and practices of the open source movement. The third part considers business models.Conclusion: A key benefit of open source is that users can access and collaborate on improving the software if they wish. Closed source code may be regarded as a strategic business risk that that may be unacceptable if there is an open source alternative. The sharing culture of the open source movement fits well with that of health and social care.

Download Full-text

Newborn screening data management: proposing a framework for Iran

BMJ Health & Care Informatics ◽

10.14236/jhi.v25i4.985 ◽

2018 ◽

Vol 25 (4) ◽

pp. 221-229 ◽

Cited By ~ 1

Author(s):

Haleh Ayatollahi ◽

Sara Karimi ◽

Maryam Ahmadi

Keyword(s):

Child Health ◽

Data Collection ◽

Newborn Screening ◽

Data Management ◽

Study Data ◽

Classification Systems ◽

Department Of Health ◽

Conducting Research ◽

Data Elements

IntroductionDifferent countries use a variety of methods to manage the newborn screening data. In this study, we aimed to compare the experiences of the selected countries to propose a framework for managing the newborn screening data in Iran.MethodsIn this comparative study, data were collected using electronic databases and the official website of the Department of Health in America, England and Australia. Data related to the process of newborn screening in Iran were collected using an open-ended questionnaire and reviewing the published documents.ResultsIn this study, a framework for newborn screening data management was proposed which consisted of six main areas, namely; objectives, involved organisations, data elements, data collection processes, data classification systems and the methods of controlling data quality.ConclusionThe framework suggested in this study can help to re-organise the process of newborn screening with more focus on data management. These data can be used in conducting research and setting strategies for improving the quality of child health in the country.

Download Full-text