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ANDS NHMRC presentation 10 May 2017

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Presentation given to NHMRC staff about sharing data outputs from health and medical research

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ANDS NHMRC presentation 10 May 2017

  1. 1. Kate LeMay ANDS seminar: sharing data outputs from health and medical research projects Senior Research Data Specialist 10 May 2017
  2. 2. The Australian National Data Service (ANDS) makes Australia’s research data assets more valuable for researchers, research institutions and the nation.
  3. 3. Some definitions • Research Materials • Research Outputs • Data Outputs
  4. 4. ANDS and the health and medical research community Health-y data workshops (2015/16) (7 workshops, 500 professionals) Funded projects CRC, MRI NHMRC relationship Health data community group (23 Things) 10 medical and heath research data Things Health Libraries Australia Medical editors Health and medical data webinar series
  5. 5. ANDS messages to researchers • Plan to publish • There are choices for sensitive data • Published is not the same as open
  6. 6. Why share Data Outputs?
  7. 7. 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)
  8. 8. The data sharing landscape Productivity Commission International funders NHMRC Journals
  9. 9. International funders Many are mandating data sharing FAIR – Findable Accessible Interoperable Reusable
  10. 10. Data sharing landscape Funders NHMRC Statement on Data Sharing Human Research Ethics Application (HREA) National Statement on Ethical Conduct in Human Research (consent to future use) Discovery, linkage Data Management Plan
  11. 11. “NHMRC-funded researchers are encouraged to consider from the earliest stages of research planning how their research data will be obtained, managed, curated, stored and disseminated into an appropriate, publicly accessible database.” NHMRC Statement on Data Sharing (2016)
  12. 12. Journals BMJ 2015;350:h2373 http://journals.plos.org/plosone/s/data-availability http://www.icmje.org/news-and-editorials/M15-2928-PAP.pdf
  13. 13. Data sharing is on the horizon
  14. 14. So Researchers are encouraged to share Data Outputs – now the question is how?
  15. 15. Legal: Privacy legislation
  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 and informed consent
  18. 18. Informed consent 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. Licensing data Creative commons
  20. 20. What does creative commons look like?
  21. 21. Data de-identification
  22. 22. Identifiable* Re-identifiable* Non-identifiable* De-identification/ Anonymisation removing identifying information (‘identifiers’) for publishing, sharing or reuse Identifiers removed from main dataset and replaced by a code. Code is stored separately (preferably encrypted) Identifiers permanently removed Recombining the re- identifiable data set and the identifiers OR Linking different data sets No specific individual can be identified Possible to re-identify an individual Identity of an individual can be reasonably ascertained Data set can be created as non-identifiable by never being labelled with identifiershttp://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
  23. 23. What about sharing data that can’t be de-identified? healthtalkaustralia.org Informed consent / mediated access
  24. 24. Where to publish data Repositories Mediated access
  25. 25. Depositing data outputs What is a data repository? A research data repository is a managed environment capable of storing and sharing (largely) digital data. The data repository supports the process of curating, preserving, and sharing research data.
  26. 26. Choices about publishing data outputs 1. Metadata only 2. Metadata plus mediated access 3. Metadata plus open access What is metadata? Location • Institutional repository • Discipline specific repository • General repository
  27. 27. ANDS Resources
  28. 28. Resources for medical and health data ands.org.au/working-with-data/sensitive-data ands.org.au/medical
  29. 29. ORCiD
  30. 30. ●A unique identifier for researchers ●A set of standard procedures for connecting researchers to their affiliations and activities ●An international-scale open research effort What is ORCiD
  31. 31. Some of the benefits • Automatic update • Less time reporting more time researching • Accurate attribution • Discoverability • Reliable citation statistics • Link in with funder systems • Reporting of grants to research institute could be automated • Reporting of publications to funders could be automated
  32. 32. Summary • ANDS has been reaching out to the health and medical research community • ANDS resources for publishing and sharing sensitive data • Messages • Plan to publish • There are choices for sensitive data • Published is not the same as open
  33. 33. What do people need to know further about data management and sharing Data Outputs? How will this affect the researchers NHMRC funds and the work of NHMRC?
  34. 34. Senior Research Data Specialist kate.lemay@ands.org.au Twitter @katelemayands 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 is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program. Monash University leads the partnership with the Australian National University and CSIRO.

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