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Data management and sharing principles for health and medical data: CDU

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Presentation by Kate LeMay to researchers at Charles Darwin University on the topic "Data management and sharing principles for health and medical data" on 12 June 1028

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Data management and sharing principles for health and medical data: CDU

  1. 1. Data management and sharing principles for health and medical data Senior Research Data Specialist 12 June 2018 Kate LeMay
  2. 2. Data management
  3. 3. Charles Darwin University http://www.cdu.edu.au/governance/doclibrary/pro-123.pdf http://www.cdu.edu.au/governance/doclibrary/pol-035.pdf http://libguides.cdu.edu.au/c.php?g=168003&p=1103174
  4. 4. Data Management PLANNING PLAN Improve efficiency Protection QualityCompliance Exposure
  5. 5. Research data sharing
  6. 6. International Funders Many are mandating data sharing
  7. 7. Australian funders • Discovery and linkage grant applications need a data management paragraph • Human Research Ethics Application (HREA) • National Statement on Ethical Conduct in Human Research Open access policies Australian Code for the Responsible Conduct of Research
  8. 8. Australian Government http://dataavailability.pmc.gov.au/
  9. 9. Journals BMJ 2015;350:h2373 http://journals.plos.org/plosone/s/data-availability http://www.nejm.org/doi/full/10.1056/NEJMe1601087#t=article http://www.icmje.org/news-and-editorials/data_sharing_june_2017.pdf
  10. 10. Charles Darwin University http://www.cdu.edu.au/governance/doclibrary/pro-123.pdf http://www.cdu.edu.au/governance/doclibrary/pol-035.pdf http://libguides.cdu.edu.au/c.php?g=168003&p=1103174
  11. 11. Data sharing is on the horizon
  12. 12. Why share Data Outputs? Data sharing Discoverable and citable Pubs with data cited more often Collaborations and publications Secure and ongoing storage in repositories Replicate or extend findings Reduces burden on participants Ethical obligation (clinical trials)
  13. 13. Choices about publishing 1. Metadata only 2. Metadata plus mediated access 3. Metadata plus open access • Location • Institutional repository • Discipline specific repository • General repository
  14. 14. Repositories (search for repositories) DOI Research Data Australia
  15. 15. DOIs for data
  16. 16. Legal: Privacy legislation Privacy Act 1988 Personal information Sensitive information Health information Sensitive data “data that can be used to identify an individual, species, object, process or location that introduces a risk of discrimination, harm or unwanted attention.” Guide to Publishing and Sharing Sensitive Data http://www.ands.org.au/guides/sensitivedata
  17. 17. Ethics • Informed consent • Avoid harm (=remove/minimise sensitivity) • De-identifying data • Conditions around access to data (mediated access) • Ethics committee approval • See also ANDS’ health and medical webinar series http://www.ands.org.au/working-with-data/sensitive-data/medical-and- health/webinars-health-and-medical
  18. 18. Informed consent for data sharing 1. Avoid precluding data de-identification, publication and sharing 2. State possibility of future data publication 3. State conditions of access 4. Document consent with collected data to inform subsequent users Example wording available in ANDS Guide to Publishing and Sharing Sensitive Data
  19. 19. Identifiable* Re-identifiable* Non-identifiable* De-identification/ Anonymisation No specific individual can be identified Possible to re-identify an individual Identity of an individual can be reasonably ascertained http://www.ands.org.au/working-with- data/sensitive-data/de-identifying-data * Terms from National Statement on Ethical Conduct in Human Research 2007 (Updated May 2015) Data de-identification
  20. 20. What about sharing data that can’t be de-identified? healthtalkaustralia.org Informed consent / mediated access
  21. 21. Licences • Without a licence it’s unclear how data can be reused • Tells how data can be (re)used and attributed • All Australian data intended for reuse should have a licence • Gives the owner control and credit
  22. 22. Creative commons
  23. 23. Licensing and data NOT FOR DATA   Be as open as possible
  24. 24. F.A.I.R data principles • Findable • Accessible (not Open) • Interoperable • Reusable http://www.ands.org.au/working-with-data/fairdata
  25. 25. Resources for medical and health data ands.org.au/working-with-data/sensitive-data ands.org.au/medical Publishing and sharing sensitive data Guide Data sharing considerations for Human Research Ethics Committees Guide De-identification Guide
  26. 26. ands.org.au/medicalthings
  27. 27. Senior Research Data Specialist kate.lemay@ands.org.au Kate LeMay With the exception of third party images or where otherwise indicated, this work is licensed under the Creative Commons 4.0 International Attribution Licence. ANDS, Nectar and RDS are supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program (NCRIS).

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