Sharing Research Data to Improve Public Health in Africa A Workshop Summary (2015) / Chapter Skim
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3 Establishing Equitable Terms for Data Sharing
3 Establishing Equitable Terms for Data Sharing
Pages 17-36
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From page 17... ...
Collaborations around data to serve global health reflect a vision of a common world with common problems. Harnessing the most effective collaborative efforts can yield shared returns, particularly to the poorer communities and societies, he said.
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From page 18... ...
Common investments from the Hewlett Foundation helped with institutional development, joint grants generation, joint research, linked capacity building, improved administration, and collaborative opportunities for students and staff. Tollman emphasized that leadership of collaborations can take many forms, but they share several important elements: • A start-up phase to ensure high-level commitment and lay a foundation.
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From page 19... ...
So it is fundamental to know what the function is, what the purpose is, and then to ensure that the structure in the enabling environment supports that." In response to a participant's question about his experience with the role of supporting institutions in building effective partnerships, Tollman emphasized the vital importance of administrative support to create an "effective administrative organizational platform"; he also said funders can support and sometimes lead the leaders to develop mutually rewarding arrangements, particularly in institutions where there is the potential for leadership. Outputs and Metrics One incentive for data sharing is tied to outputs and metrics of research.
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The impact question is important not only because of the desire to be better at explaining the benefits of sharing data, but also answering questions like, What has actually changed? How has behavior changed?
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APHRC's first data access and sharing policy was drafted in 2007, and the executive director led the INDEPTH data sharing and access policy process. They have a micro data portal that is part of their core funding to make 28 datasets publicly available as part of the INDEPTH Sharing and Access Repository (iSHARE)
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From page 22... ...
Certain well-resourced large studies make data available themselves through study websites, and most studies, including studies that have terminated, have accessible data; for example, the University of Michigan's ICPSR data archive. There are levels of data access, with some available through public release, some with restricted use that requires an approved data use agreement, and others that are considered sensitive and may be accessed through data enclaves.
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From page 23... ...
The conversation needs to broaden beyond workshop participants and may have to start with the basics about data quality, sharing, and the potential benefits given that data are available. Institutions need to have the right policies and the right guidelines and procedures for research contracting, citing the Council on Health Research for Development (COHRED)
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, to enhance genomic research on African populations conducted in Africa rather than relying on work done in Europe and North America. The project is a partnership focused on capacity building, with the goal of enabling data producers to also become primary data users and analysts.
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Ramsay said the nature of the data -- whole genomes or genome-wide genotyping data -- made H3Africa decide to leverage existing community data repositories in a format that is the same as other formats so data can be retrieved, analyzed, and compared, rather than build new repositories. They also discussed mirroring the databases on the African continent to make them more accessible to African researchers.
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The majority of members will be Africans. The committee will develop policies for internal and external access and will review applications to ensure compliance with what the ethics review boards originally approved and the consent given by the participants.
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The discussion indicated that this policy varies across universities. The DBAC for H3Africa will put caveats on the review and look for evidence of scientific grounding but require projects to go back to ethics review boards.
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FAIR RESEARCH CONTRACTING Jacintha Toohey, policy project adviser of COHRED, presented COHRED's Fair Research Contracting (FRC) Initiative and how it contributes to equitable data sharing.4 According to Toohey, "COHRED contributes to the global health and development arena in a unique manner by enabling the growth of research and innovation systems in low and middle-income countries." They believe that achieving and sustaining global health research is dependent on the capacity of LMICs to use science and innovation to solve their priority health and development problems, both on their own and in partnerships with HICs, as well as within their own arena of researchers, innovators, and institutions.
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From page 29... ...
As Toohey explained, the FRC Initiative believes that HICs are called to engage in good partnerships, which means a move toward leveling the playing field in global health research, strengthening of capacity in LMICs to engage in better partnerships, and reducing LMIC dependence on goodwill in HICs. In response, the FRC has identified best practices for research contracting and developed tools that are then placed in the hands of institutions, as well as governments, with limited legal capacity and also where there is no legislative framework.
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From page 30... ...
Toohey stated that fairness in data sharing is a key component of fair research contracting, as well as a component of CFI. Defining fairness in contracts and then measuring it in a certification system are unresolved issues, but will be an indicator in the fairness index.
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Earth Systems Science Data was one of the first and GigaScience is a major big data publisher. Ubiquity Press publishes "metajournals," which provide a publishing platform for data software bio resources.
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Ultimately, data papers provide context and enable others to re-use the data properly. In Ubiquity metajournals,7 data papers look very much like traditional articles but are clearly labeled to avoid confusion.
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From page 33... ...
He also observed the call for sustainability funding and core support, the point that sharing data is a form of quality assurance, and that capacity building is needed, including possibly related to data curation and management. A participant raised a question about the distribution of responsibility to create equitable situations.
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From page 34... ...
Rather than exporting data in collaborative projects with Northern partners, the storage and manipulation of the data and preparation of the data can be done locally in the research organizations, he said. BREAKOUT GROUP DISCUSSION: ESTABLISHING EQUITABLE TERMS FOR DATA SHARING The participants broke into small groups to discuss two points: (1)
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From page 35... ...
The incentives could come in the form of (a) designation of a portion of project funding for data sharing, with amounts tailored to the level of institutional capacity with the understanding that institutions that are sharing data for the first time would need more funding to build capacity; (b)
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