WorldWide Antimalarial Resistance Networks efforts to level the playing field for data sharing by researchers in malaria endemic countries GFBR 2018 Professor Karen I Barnes Division of Clinical Pharmacology ID: 936007
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Promoting EquityThe WorldWide Antimalarial Resistance Network’s efforts to “level the playing field” for data sharing by researchers in malaria endemic countriesGFBR 2018
Professor Karen I Barnes
Division of Clinical Pharmacology| University of Cape Town (UCT)Director: Pharmacology | WorldWide Antimalarial Resistance Network (WWARN)Founding Director| MRC Collaborating Centre for Optimising Antimalarial Therapy (CCOAT)
Slide2WWARN visionTo provide the information necessary to prevent or alleviate antimalarial drug resistance and therefore reduce malaria morbidity and mortality
Slide3WWARN - advancing data sharing
Slide4Slide5Promoting Equity 1:
Toolkit
Slide6Promoting Equity 2:Study groupsPooled scientific expertiseEquitable access to dataEquitable benefit from pooled analyses
Translating science into public health action by enhancing the value of existing data e.g. IPD meta-analyses:
Greater statistical power
Increased validity and generalisabilitySufficient sample size to examine vulnerable populations Ensure efficacy of existing and new drugs
Slide7Promoting Equity 3: Building capacity Successful training workshops on data management, data sharing and individual patient data (IPD) meta-analysis in East, West and Southern Africa Hosting six EDCTP / TDR career development fellows from LMICs to gain the skills required to lead future efforts to make the best use of available data to inform policy and practice. As a part of the Infectious Diseases Data Observatory (IDDO), WWARN also contributes to work with other research communities to replicate this model for other neglected poverty-related diseases and emerging infections.
Visceral leishmaniasis
Schistosomiasis
Non-malarial febrile illness
Soil
transmitted Helminths
Ebola
Slide8Slide9Recommendations for promoting equitySustainability of data platformsSimultaneously achieving scientific expediency & equitable data sharing requires:Investment in readily accessible resources needed to enhance the quality and efficiency of primary data collection and secondary analyses.Allocation of specific, medium to long term funding to data platforms supporting poverty related disease research communitiesResearch landscape evolution Incentives / rewards for ALL contributors to secondary analysesAligning international guidelines on authorship criteria with additional complexities of secondary analyses. Aligning academic promotion with data sharing mandates
Slide10Conclusion: In our experience, equitable data sharing requires broad participation in the Digital & Trustworthy Evidence EcosystemDisseminate evidence to policy makers e.g. WHO, national MoH Disseminate evidence to clinicians, pharma, researchers, patientsImplement evidence
Synthesize evidence Analyze data, and publish systematic reviews and meta-analyses
Produce evidence & tools to enhance primary data collection (clinical, laboratory and surveillance)Evaluate practiceTrustworthy evidenceCulture of sharingCommon understanding of methodsDigitally structured dataTools and platforms to help implement
Data sharing platform
Secure sharing of FAIR Individual Participant Data
Slide11Thank you
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