The data sharing landscape and planning to publish
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Presentation by Kate LeMay, ANDS Senior Research Data Specialist. Presented at the ANDS/Intersect sharing health-y data: challenges and solutions II workshop on 26th October 2016
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The data sharing landscape and planning to publish
- 1. Kate LeMay The data sharing landscape and planning to publish Senior Research Data Specialist 28 October 2016
- 2. The Australian National Data Service (ANDS) makes Australia’s research data assets more valuable for researchers, research institutions and the nation.
- 3. Sensitive data What makes medical and health data sensitive? Personal (identifiable) information + potential for harm or discrimination
- 4. Data sharing can be done safely and ethically Plan to publish
- 5. Why would you share data??! 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) Which data???
- 6. Data sharing landscape Funders NHMRC Statement on Data Sharing New Human Research Ethics Application (HREA – replaces NEAF) National Statement on Ethical Conduct in Human Research (S2 consent to future use) Discovery, linkage Data Management Plan
- 9. Data sharing is on the horizon
- 10. Examples of published medical and health data
- 15. Plan to Publish NHMRC Statement on Data Sharing (2016) https://www.nhmrc.gov.au/grants-funding/policy/nhmrc-statement-data-sharing
- 16. Planning to publish: you have choices 1. Metadata only 2. Metadata plus mediated access 3. Metadata plus open access What is metadata? • Location • Institutional repository • Discipline specific repository • General repository
- 18. ANDS Guide to Publishing and Sharing Sensitive Data http://www.ands.org.au/guides/sensitivedata Guide Conditional access Ownership Licensing Repositories How to confidentialise Ethics and consent
- 20. Senior Research Data Specialist kate.lemay@ands.org.au ands.org.au/medical Kate LeMay With the exception of logos, third party images or where otherwise indicated, this work is licensed under the Creative Commons Australia Attribution 3.0 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.
Editor's Notes
- any data that contain information that can be used to identify an individual and introduce a risk of discrimination, harm or unwanted attention’
- “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
- Which data: not open access of outcomes e.g. publications. Not active data. Finalised datasets from completed studies. Thomson Reuters data citation index You can reduce the risk of data loss by keeping your research data safe and secure in robust and appropriate data storage facilities International Committee of Medical Journal Editors (ICMJE) and BMJ say there is an ethical obligation to responsibly share data generated by interventional clinical trials because participants have put themselves at risk.
- NHMRC acknowledges the importance of making data publicly accessible. NHMRC encourages data sharing and providing access to data and other research outputs (metadata, analysis code, study protocols, study materials and other collected data) arising from NHMRC supported research. Researchers are therefore encouraged to share data with as much breadth and depth as possible, while taking into account their ethical-legal obligations, and providing sufficient metadata to allow others to reuse their data. The establishment, management and publication of research datasets is increasingly recognised not only as good research practice in helping to expedite research, but also as a key element in assessing a researcher’s achievements and its impact. Image: http://www.arthurweill.fr/Unsplash-results/en/3/LANDSCAPE
- Other examples Data sphere project, a consortium of pharmaceutical companies sharing data from the control arm of oncology trials Yale University Open Data Access project, which is initially making trial data from Medtronic available
- “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