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Research data management and sharing of medical data

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Poster presented by Kate LeMay to the NHMRC Research Translation Symposium in Sydney on 27-28 November 2018

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Research data management and sharing of medical data

  1. 1. Research data management and sharing of medical data The ARDC is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program Kate LeMay Senior Research Data Specialist Australian Research Data Commons (ARDC) kate.lemay@ardc.edu.au With the exception of third party images or where otherwise indicated, this work is licensed under the Creative Commons Attribution 4.0 International Licence. Why manage and share health and medical research data? ARDC helps with data management and sharing! Many international funders are mandating data management and sharing as a condition of their funding NHMRC and ARC strongly support data management and sharing Open access policies Australian Code for the Responsible Conduct of Research (updated 2018) National Statement on Ethical Conduct in Human Research (updated 2018) HREA being updated to be in line with new requirements Data management statement required for ARC national competitive grants R22 Retain clear, accurate, secure and complete records of all research including research data and primary materials. Where possible and appropriate, allow access and reference to these by interested parties. 3.1.45 For all research, researchers should develop a data management plan that addresses their intentions related to generation, collection, access, use, analysis, disclosure, storage, retention, disposal, sharing and re-use of data and information, the risks associated with these activities and any strategies for minimising those risks. 3.1.50 In the absence of justifiable ethical reasons (such as respect for cultural ownership or unmanageable risks to the privacy of research participants) and to promote access to the benefits of research, researchers should collect and store data or information generated by research projects in such a way that they can be used in future research projects. Where a researcher believes there are valid reasons for not making data or information accessible, this must be justified. Advantages to researchers Maximises value of investment in research Datasets deposited in a repository can get a DOI like papers Citations can be counted towards academic recordMore exposure for your research (findable) More collaborations Papers with shared data are cited more often (Piwowar, Day, & Fridsma. PLoS ONE. 2007;2[3]:e308) Secure ongoing storage for data Avoid data loss Data retention is required for defence of research (research integrity) Increases transparency and reproducibility of research Icons made by Freepik are licensed by CC BY 3.0 Entire FAIR resources graphic is licensed under a Creative Commons Attribution 4.0 International License The management, retention, and appropriate sharing of research data is a key step in improving the integrity, value and reproducibility of research. 10 Medical and Health Things is an online self- directed learning program focusing on management and sharing of medical data The Publishing and Sharing Sensitive Data Guide walks researchers through things they need to consider when sharing medical data F.A.I.R training resources ands.org.au/medical ICMJE, NEJM & BMJ say there is an ethical obligation to responsibly share data generated by interventional clinical trials because participants have put themselves at risk Ethics ands.org.au/working-with-data/fairdata All ARDC resources are free and reusable

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