Sharing Research Data to Improve Public Health in Africa A Workshop Summary (2015) / Chapter Skim
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Pages 5-16
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He highlighted the interests of funders of public health research and of the Public Health Research Data Forum (PHRDF) ,1 which he manages, in sharing research data to improve public health.
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The 2013 statement by the G8 Science Ministers similarly explicitly highlighted the importance of access to both research data and research publications.4 Carr pointed to parallel developments tied to privacy and confidentiality protections. For example, the European Data Protection Regulations call for more stringent protections that could impede data sharing, and South Africa has passed a privacy law tied to human subject research.
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BENEFITS AND CHALLENGES OF DATA SHARING IN THE AFRICAN CONTEXT: THE INDEPTH NETWORK Kobus Herbst, deputy director of the Africa Center for Health and Population Studies, presented on the multiyear experience of the INDEPTH network,5 a network of approximately 50 research centers that run health and demographic surveillance systems (HDSS) , mostly in Africa but also in India, Southeast Asia, and Oceania.
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One side argued that suboptimal access to data impedes international research and the potential substantial benefits of sharing, while the other side argued major technical obstacles should be addressed. The paper also pointed to the pioneering work being done by the networks and the fact that "the developing country scientist wants to move away from being primary producers of data for developed country scientists 6 Chandramohan, D., Shibuya, K., Setel, P., Cairncross, S., Lopez, A., Murray, C., Zaba, B., Snow, R., and Binka, F
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Osman Sankoh, executive director of INDEPTH, and Carel Ijsselmuiden, director of the Council on Health Research for Development South Africa, published an opinion, Sharing Research Data to Improve Public Health, A Perspective from the Global South in The Lancet,7 which stated that fair trade in data "implies achieving a balance between the rights and responsibilities of those who generate data and those who analyze and publish results using those data. Such a balance lies in ensur 7 Sankoh, O., and Ijsselmuiden, C
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In 2008, three additional African sites joined, and the repository was later expanded to include sites in Vietnam, Bangladesh, and Nairobi, Kenya. To responsibly enable sharing of these data, INDEPTH developed a data access and sharing policy agreed to and owned by all INDEPTH members.
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He posed the question of how to address this given the struggles faced by overburdened data managers, scientists, and leaders of research facilities within Africa. BOX 2-2 An Example of Disclosure Risk Kobus Herbst used the following scenario to illustrate how data can disclose personal identity: A first-year computer science student at the University of Zululand is from one of the homesteads within the Africa Center's demographic surveillance site.
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Finally, INDEPTH's data curation workshops train managers at participating centers to use the Centre in a Box and the associated toolset. Each participating center receives a fully configured Centre in a Box and data extracted from center databases in a common intermediate form; there are common and standard procedures to process the data further and calculate quality metrics and then document the data using Data Documentation Initiative metadata.
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Fairness calls for the "foot soldier" who collects the data to get credit for the work, one participant stated. Ethical Imperative A participant questioned the articulation of the ethical imperative as focused only on the research participant and the potential harm of secondary analysis.
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It was pointed out that the data management plans emphasized in funder statements provide a great opportunity, as they represent a commitment by funders to provide resources to manage the data resource after release of the initial reports. Community Engagement In response to a question about lessons from INDEPTH around community expectations, knowledge and understanding, and benefit sharing, Herbst described several initiatives, including cooperatives that involve data subjects and an experiment at the Africa Center around "data everywhere," in which one of the components is an interactive environment where community members can explore the data available on the community itself.
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Qualitative Research Data Protecting the rights of individuals who give qualitative interviews is also a concern. While the INDEPTH network does not collect qualitative data, the global debate on open access to data includes qualitative research.
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