Sharing Research Data to Improve Public Health in Africa A Workshop Summary (2015) / Chapter Skim
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5 Enabling Data Discoverability, Linkage, and Re-use
5 Enabling Data Discoverability, Linkage, and Re-use
Pages 59-76
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From page 59... ...
These include ensuring that health research datasets are accessible and usable for researchers and other users, and maximizing the potential to link datasets -- those collected for the purpose of research with those collected for other purposes. MAXIMIZING ACCESS AND RE-USE OF RESEARCH DATA: LESSONS ABOUT OPPORTUNITIES AND CHALLENGES FROM THE SOCIAL SCIENCES Myron Gutmann, professor of history and director of the Institute for Behavioral Sciences at the University of Colorado Boulder, and former assistant director for social, behavioral, and economic sciences at the U.S.
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From page 60... ...
In the early 1960s, census micro data and major surveys began to be shared and these publicly available data became the basis for research in the social and behavioral sciences. Several factors, including the rise of social science disciplines and nongovernmental research, coupled with an interest in social science immediately after World War II, led to an interest in increased understanding of social processes and investment in social science.
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From page 61... ...
The availability of social media data, the increasing role of administrative data, and the use of commercial data in research create a broad innovation space for creative analysis of social problems, Gutmann said. They also lead to analytic issues tied to the size and complexity of integrated data and how to use them in a meaningful way, as well as how to know what inferences can be drawn from combined data that may have uneven coverage and uneven quality.
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ENABLING DATA LINKAGE TO MAXIMIZE THE VALUE OF PUBLIC HEALTH RESEARCH DATA: A PHRDF REPORT Felix Ritchie, a professor of applied economics at the University of the West of England (UWE) in Bristol, and his co-author, Alex Montgomery,
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From page 63... ...
The project team represented the business school and the public health school at UWE, DataFirst, and the Center for Injury Prevention Research in Bangladesh. It was designed to offer a range of perspectives by including a mix of people from different socioeconomic backgrounds and work perspectives, including data access, clinical work, and epidemiological work.
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For example, administrative data or census data were not provided with consent for use in statistical research. Often, when data are collected for health research purposes, broad consent is acquired for that data.
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From page 65... ...
Low- and Middle-Income Country Experience There is less information about LMICs and data sharing, according to Ritchie, but based on the information they had, the LMIC experience is dominated by operational and quality issues. For example, publicly funded health data are held by institutions and universities, and only available to collaborators, rather than having research facilities in place to share those data.
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From page 66... ...
Another participant shared an example of linking population-based HIV sero conversion data obtained by household surveillance to antiretroviral treatment data from public clinics. Ethical Review Boards Participants had a lively exchange about the role and perspective of ethical review boards in reviewing and approving research involving shared data.
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From page 67... ...
BUILDING PARTNERSHIPS FOR DATA SHARING, LINKAGE, AND RE-USE This panel session picked up on earlier points about building partnerships with statistical authorities, data controllers, data owners, those responsible for the ethical control permission of research, research communities, and funders. 4 For more information, see http://genomicsandhealth.org/ [August 2015]
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From page 68... ...
Zaba commented that when they pool their data, the statistical power is much greater than if each site only has its own data to look at. But while all the sites may have looked at HIV and fertility "somebody has done it one way, somebody has done it another way," she said.
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From page 69... ...
The network has a current grant application into Welcome Trust to make their data tables publicly sharable. Capacity Bootstrapping Zaba described the ALPHA approach to capacity building, as "capacity bootstrapping." ALPHA has a scientific advisory committee that involves principal investigators from all the member study sites.
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Collaborations The ALPHA network collaborates with other networks, including INDEPTH, Idea (a network of HIV clinical cohorts) , and the HIV modeling consortium.
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,6 presented on WWARN's efforts to bring the antimalarial research community together to make malaria treatment more effective. WWARN was created with the mission of providing the information necessary to prevent or slow antimalarial drug resistance, to make sure individuals have the most effective treatments, and to thereby prevent malaria morbidity and mortality.
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From page 72... ...
Barnes pointed out that WWARN provides numerous free tools to help researchers with planning their data; provides templates, protocols, and tools for analyzing data; and generates automated reports. WWARN also runs a proficiency-testing program for laboratories, pharmacology and in vitro drug quality laboratories.
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From page 73... ...
They were able to determine that increasing the recommended dose slightly could halve the risk of treatment failure, and achieve the WHO goal of more than 95 percent cure rates. Barnes acknowledged concerns about the potential risks of "just pushing up a dose." To address that, they pulled all the pharmacokinetic data of drug concentrations that had been measured, from all WWARN sites that had measured them, and modeled how to shift the dose to make sure that the minimum exposure was high enough, but the maximum exposure was not too high.
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From page 74... ...
Statistics South Africa Dan Kibuuka, a director at Statistics South Africa (Stats SA) 7 responsible for health statistics and for managing the acquisition, collection, and analysis of health information from household-based surveys, talked about what Stats SA does and what they are capable of doing, and the interactions that have taken place.
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From page 75... ...
• Census (supposed to be every 5 years, but funding limitations have sometimes prevented that and required a large community survey instead) Stats SA works with the National Department of Health, which has administrative health data, especially data from the District Health Information System (DHIS)
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From page 76... ...
It is more attractive for young researchers to develop their own cohort studies, collect their own data, and publish an original paper, and asked how to change that mindset. Zaba commented that ALPHA's capacity building and training addresses what academic training cannot because it extends beyond theory and focuses on how to approach an analytical solution to a specific problem.
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