Make Data Sharing Routine to Prepare for Public Health Emergencies

1. Wellcome Trust. Sharing data during Zika and other global health emergencies. 10 Feb 2016. https://wellcome.ac.uk/news/sharing-data-during-zika-and-other-global-health-emergencies

2. World Health Organization. Developing global norms for sharing data and results during public health emergencies. http://www.who.int/medicines/ebola-treatment/data-sharing_phe/en/

3. Amsen E. What is open science? Discussions–F1000 Research. http://blog.f1000research.com/2014/11/11/what-is-open-science/

4. Hanwell M. What is open science? Opensource.com. https://opensource.com/resources/open-science

5. Pomerantz J, Peek R. Fifty shades of open. First Monday. 2016;21. http://firstmonday.org/ojs/index.php/fm/article/view/6360

6. Open notebook science. Wikipedia, the free encyclopedia. https://en.wikipedia.org/w/index.php?title=Open_notebook_science&oldid=719360582

7. Open government. Wikipedia, the free encyclopedia. https://en.wikipedia.org/w/index.php?title=Open_government&oldid=681917606

8. Toronto International Data Release Workshop Authors, Birney E, Hudson TJ, Green ED, Gunter C, Eddy S, et al. Prepublication data sharing. Nature. 2009;461 : 168–170. doi: 10.1038/461168a 19741685

9. Walport M, Brest P. Sharing research data to improve public health. Lancet 2011;377 : 537–539. doi: 10.1016/S0140-6736(10)62234-9 21216456

10. Pham-Kanter G, Zinner DE, Campbell EG. Codifying collegiality: recent developments in data sharing policy in the life sciences. PLoS ONE. 2014;9: e108451. doi: 10.1371/journal.pone.0108451 25259842

11. Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry. CDC/ATSDR policy on releasing and sharing data. 16 April 2003 (updated 7 September 2005). http://www.cdc.gov/maso/Policy/ReleasingData.pdf

12. Centers for Disease Control and Prevention. Additional requirements for funding opportunity announcements. AR-25: Release and sharing of data. http://www.cdc.gov/grants/additionalrequirements/index.html#ui-id-49

13. Bill & Melinda Gates Foundation. Open Access Policy. http://www.gatesfoundation.org/How-We-Work/General-Information/Open-Access-Policy

14. Open Government Partnership. http://www.opengovpartnership.org/

15. Kurata K, Morioka T, Yokoi K, Matsubayashi M. Remarkable growth of open access in the biomedical field: analysis of PubMed articles from 2006 to 2010. PLoS ONE. 2013;8: e60925. doi: 10.1371/journal.pone.0060925 23658683

16. Archambault E, Amyot D, Deschamps P, Nicol A, Provencher D, Rebout L, Roberge G. Proportion of open access papers published in peer-reviewed journals at the European and world levels—1996–2013. European Commission. 2014. http://science-metrix.com/en/publications/reports/proportion-of-open-access-papers-published-in-peer-reviewed-journals-at-the

17. Barbui C. Sharing all types of clinical data and harmonizing journal standards. BMC Med. 2016;14 : 63. doi: 10.1186/s12916-016-0612-8 27038634

18. Taichman DB, Backus J, Baethge C, Bauchner H, de Leeuw PW, Drazen JM, et al. Sharing Clinical Trial Data: A Proposal From the International Committee of Medical Journal Editors. Ann Intern Med. 2016;164 : 505–506. doi: 10.7326/M15-2928 26792258

19. Owens B. Data Sharing. Montreal institute going “open” to accelerate science. Science. 2016;351 : 329. doi: 10.1126/science.351.6271.329 26797995

20. cmrivers/ebola. GitHub. https://github.com/cmrivers/ebola

21. Yozwiak NL, Schaffner SF, Sabeti PC. Data sharing: Make outbreak research open access. Nature. 2015;518 : 477–479. doi: 10.1038/518477a 25719649

22. Chretien J -⁠ P, Riley S, George DB. Mathematical modeling of the West Africa Ebola epidemic. eLife. 2015;4. doi: 10.7554/eLife.09186

23. Vallance P, Freeman A, Stewart M. Data Sharing as Part of the Normal Scientific Process: A View from the Pharmaceutical Industry. PLoS Med. 2016;13: e1001936. doi: 10.1371/journal.pmed.1001936 26731493

24. Modjarrad K, Moorthy VS, Millett P, Gsell P-S, Roth C, Kieny M-P. Developing Global Norms for Sharing Data and Results during Public Health Emergencies. PLoS Med. 2016;13: e1001935. doi: 10.1371/journal.pmed.1001935 26731342

25. Messina J, Kraemer M, Hay S. Call for submissions: Zika virus related datasets. Scientific Data. 20 January 2016. http://blogs.nature.com/scientificdata/2016/01/20/call-for-submissions-zika-virus-related-datasets/

26. cdcepi/zika. GitHub. https://github.com/cdcepi/zika

27. Butler D. Zika researchers release real-time data on viral infection study in monkeys. Nature. 2016; doi: 10.1038/nature.2016.19438

28. Callaway E. Zika-microcephaly paper sparks data-sharing confusion. Nature. 2016; doi: 10.1038/nature.2016.19367

29. Federer LM, Lu Y-L, Joubert DJ, Welsh J, Brandys B. Biomedical Data Sharing and Reuse: Attitudes and Practices of Clinical and Scientific Research Staff. PLoS ONE. 2015;10: e0129506. doi: 10.1371/journal.pone.0129506 26107811

30. Tenopir C, Dalton ED, Allard S, Frame M, Pjesivac I, Birch B, et al. Changes in Data Sharing and Data Reuse Practices and Perceptions among Scientists Worldwide. PLoS ONE. 2015;10: e0134826. doi: 10.1371/journal.pone.0134826 26308551

31. Smith R, Roberts I. Time for sharing data to become routine: the seven excuses for not doing so are all invalid. F1000Research. 2016;5 : 781. doi: 10.12688/f1000research.8422.1 27347380

32. Whitty CJM, Mundel T, Farrar J, Heymann DL, Davies SC, Walport MJ. Providing incentives to share data early in health emergencies: the role of journal editors. Lancet. 2015;386 : 1797–1798. doi: 10.1016/S0140-6736(15)00758-8 26843294

33. Zinner DE, Pham-Kanter G, Campbell EG. The Changing Nature of Scientific Sharing and Withholding in Academic Life Sciences Research: Trends From National Surveys in 2000 and 2013. Acad Med J Assoc Am Med Coll. 2016;91 : 433–440. doi: 10.1097/ACM.0000000000001028

34. PLOS Medicine Editors. Can Data Sharing Become the Path of Least Resistance? PLoS Med. 2016;13: e1001949. doi: 10.1371/journal.pmed.1001949 26812392

35. Berlin JA, Morris S, Rockhold F, Askie L, Ghersi D, Waldstreicher J. Bumps and bridges on the road to responsible sharing of clinical trial data. Clin Trials. 2014;11 : 7–12. doi: 10.1177/1740774513514497 24408901

36. Merson L, Gaye O, Guerin PJ. Avoiding Data Dumpsters—Toward Equitable and Useful Data Sharing. N Engl J Med. 2016; doi: 10.1056/NEJMp1605148

37. Bull S, Cheah PY, Denny S, Jao I, Marsh V, Merson L, et al. Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low -⁠ and Middle-Income Settings. J Empir Res Hum Res Ethics. 2015;10 : 302–313. doi: 10.1177/1556264615594606 26297751

38. World Health Organization. Report of the Ebola Interim Assessment Panel—May 2015. http://www.who.int/csr/resources/publications/ebola/ebola-interim-assessment/en/

39. GovLab. Open Data’s Impact. http://odimpact.org/case-battling-ebola-in-sierra-leone.html

40. Force 11 Data Citation Implementation Group. https://www.force11.org/group/data-citation-implementation-group

41. bioCADDIE | biomedical and healthCAre Data Discovery and Indexing Ecosystem. https://biocaddie.org/

42. Research Data Alliance. The DLI Service: an open one-for-all data-literature interlinking service. https://rd-alliance.org/dli-service-open-one-all-data-literature-interlinking-service.html

43. Dinsmore A, Allen L, Dolby K. Alternative perspectives on impact: the potential of ALMs and altmetrics to inform funders about research impact. PLoS Biol. 2014;12: e1002003. doi: 10.1371/journal.pbio.1002003 25423184

44. Bierer BE, Li R, Barnes M, Sim I. A Global, Neutral Platform for Sharing Trial Data. N Engl J Med. 2016; doi: 10.1056/NEJMp1605348

45. Carr D, Littler K. Sharing Research Data to Improve Public Health. J Empir Res Hum Res Ethics. 2015;10 : 314–316. doi: 10.1177/1556264615593485 26297752

46. McNabb SJN, Shaikh AT, Nuzzo JB, Zumla AI, Heymann DL. Triumphs, trials, and tribulations of the global response to MERS coronavirus. Lancet Respir Med. 2014;2 : 436–437. doi: 10.1016/S2213-2600(14)70102-X 24794576

47. World Health Organization. Handling of Influenza Genetic Sequence Data under the PIP Framework. http://www.who.int/influenza/pip/advisory_group/gsd/en