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Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study

Background: Increasingly, biomedical researchers are encouraged or required by research funders and journals to share their data, but there's very little guidance on how to do that equitably and usefully, especially in resource-constrained settings. We performed an in-depth case study of one da...

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Autores principales: Pisani, Elizabeth, Botchway, Stella
Formato: Online Artículo Texto
Lenguaje:English
Publicado: F1000Research 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5627501/
https://www.ncbi.nlm.nih.gov/pubmed/29018840
http://dx.doi.org/10.12688/wellcomeopenres.12259.1
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author Pisani, Elizabeth
Botchway, Stella
author_facet Pisani, Elizabeth
Botchway, Stella
author_sort Pisani, Elizabeth
collection PubMed
description Background: Increasingly, biomedical researchers are encouraged or required by research funders and journals to share their data, but there's very little guidance on how to do that equitably and usefully, especially in resource-constrained settings. We performed an in-depth case study of one data sharing pioneer: the WorldWide Antimalarial Resistance Network (WWARN). Methods: The case study included a records review, a quantitative analysis of WAARN-related publications, in-depth interviews with 47 people familiar with WWARN, and a witness seminar involving a sub-set of 11 interviewees. Results: WWARN originally aimed to collate clinical, in vitro, pharmacological and molecular data into linked, open-access databases intended to serve as a public resource to guide antimalarial drug treatment policies. Our study describes how WWARN navigated challenging institutional and academic incentive structures, alongside funders' reluctance to invest in capacity building in malaria-endemic countries, which impeded data sharing. The network increased data contributions by focusing on providing free, online tools to improve the quality and efficiency of data collection, and by inviting collaborative authorship on papers addressing policy-relevant questions that could only be answered through pooled analyses. By July 1, 2016, the database included standardised data from 103 molecular studies and 186 clinical trials, representing 135,000 individual patients. Developing the database took longer and cost more than anticipated, and efforts to increase equity for data contributors are on-going. However, analyses of the pooled data have generated new methods and influenced malaria treatment recommendations globally. Despite not achieving the initial goal of real-time surveillance, WWARN has developed strong data governance and curation tools, which are now being adapted relatively quickly for other diseases. Conclusions: To be useful, data sharing requires investment in long-term infrastructure. To be feasible, it requires new incentive structures that favour the generation of reusable knowledge.
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spelling pubmed-56275012017-10-10 Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study Pisani, Elizabeth Botchway, Stella Wellcome Open Res Research Article Background: Increasingly, biomedical researchers are encouraged or required by research funders and journals to share their data, but there's very little guidance on how to do that equitably and usefully, especially in resource-constrained settings. We performed an in-depth case study of one data sharing pioneer: the WorldWide Antimalarial Resistance Network (WWARN). Methods: The case study included a records review, a quantitative analysis of WAARN-related publications, in-depth interviews with 47 people familiar with WWARN, and a witness seminar involving a sub-set of 11 interviewees. Results: WWARN originally aimed to collate clinical, in vitro, pharmacological and molecular data into linked, open-access databases intended to serve as a public resource to guide antimalarial drug treatment policies. Our study describes how WWARN navigated challenging institutional and academic incentive structures, alongside funders' reluctance to invest in capacity building in malaria-endemic countries, which impeded data sharing. The network increased data contributions by focusing on providing free, online tools to improve the quality and efficiency of data collection, and by inviting collaborative authorship on papers addressing policy-relevant questions that could only be answered through pooled analyses. By July 1, 2016, the database included standardised data from 103 molecular studies and 186 clinical trials, representing 135,000 individual patients. Developing the database took longer and cost more than anticipated, and efforts to increase equity for data contributors are on-going. However, analyses of the pooled data have generated new methods and influenced malaria treatment recommendations globally. Despite not achieving the initial goal of real-time surveillance, WWARN has developed strong data governance and curation tools, which are now being adapted relatively quickly for other diseases. Conclusions: To be useful, data sharing requires investment in long-term infrastructure. To be feasible, it requires new incentive structures that favour the generation of reusable knowledge. F1000Research 2017-08-16 /pmc/articles/PMC5627501/ /pubmed/29018840 http://dx.doi.org/10.12688/wellcomeopenres.12259.1 Text en Copyright: © 2017 Pisani E and Botchway S http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
Pisani, Elizabeth
Botchway, Stella
Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study
title Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study
title_full Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study
title_fullStr Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study
title_full_unstemmed Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study
title_short Sharing individual patient and parasite-level data through the WorldWide Antimalarial Resistance Network platform: A qualitative case study
title_sort sharing individual patient and parasite-level data through the worldwide antimalarial resistance network platform: a qualitative case study
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5627501/
https://www.ncbi.nlm.nih.gov/pubmed/29018840
http://dx.doi.org/10.12688/wellcomeopenres.12259.1
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