ArticleBulletin of the World Health Organization2012
Systematic archiving and access to health research data: rationale, current status and way forward.
Article in Bulletin of the World Health Organization, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
21 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Barriers impeding research data sharing on chronic disease prevention among the older adults in low-and middle-income countries: a systematic review.Frontiers in public health · 2024Pooled it
- Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.Journal of empirical research on human research ethics : JERHRE · 2015Pooled it
- Performance criteria for verbal autopsy-based systems to estimate national causes of death: development and application to the Indian Million Death Study.BMC medicine · 2014Trial
- The importance of insufficient national data on sexual and reproductive health and rights in international databases.EClinicalMedicine · 2024Review
- Adapting public health response through lessons learnt: Nigeria's experience from Lassa fever and COVID-19.BMJ global health · 2022Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Article
- It is not enough that we require data to be shared; we have to make sharing easy, feasible and accessible too!BMJ global health · 2019Article
- Advancing good governance in data sharing and biobanking - international aspects.Wellcome open research · 2019Article
- Effect of TB/HIV Integration on TB and HIV Indicators in Rural Ugandan Health Facilities.Journal of acquired immune deficiency syndromes (1999) · 2018Article
- Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Sweat, Skepticism, and Uncharted Territory: A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya: Views on Fair Process for Informed Consent, Access Oversight, and Community Engagement.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Trust, Respect, and Reciprocity: Informing Culturally Appropriate Data-Sharing Practice in Vietnam.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Perceived Benefits, Harms, and Views About How to Share Data Responsibly: A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Article
- Biomedical Data Sharing and Reuse: Attitudes and Practices of Clinical and Scientific Research Staff.PloS one · 2015Article
- Reliable direct measurement of causes of death in low- and middle-income countries.BMC medicine · 2014Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Systematically archiving data from health research and large-scale surveys and ensuring access to databases offer economic benefits and can improve the accountability, efficiency and quality of scientific research. Recently, interest in data archiving and sharing has grown and, in developed countries, research funders and institutions are increasingly adopting data-sharing policies. In developing countries, however, there is a lack of awareness of the benefits of data archiving and little discussion of policy. Many databases, even those of large-scale surveys, are not preserved systematically and access for secondary use is limited, which reduces the return on research investment. Several obstacles exist: organizational responsibility is unclear; infrastructure and personnel with appropriate data management and analysis skills are scarce; and researchers may be reluctant to share.This article considers recent progress in data sharing and the strategies and models used to encourage and facilitate it, with a focus on the World Health Organization Western Pacific Region. A case study from the Philippines demonstrates the benefits of data sharing by comparing the number and type of publications associated with two large-scale surveys with different approaches to sharing.Advocacy and leadership are needed at both national and regional levels to increase awareness. A step-by-step approach may be the most effective: initially large national databases could be made available to develop the methods and skills needed and to foster a data-sharing culture. Duplication of costs and effort could be avoided by collaboration between countries. In developing countries, interventions are required to build capacity in data management and analysis.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.