Kate LeMay

The data sharing landscape and planning to publish

Senior Research Data Specialist

28 October 2016

The Australian National Data Service (ANDS) makes Australia’s research data assets more valuable for researchers, research institutions and the nation.

Sensitive dataWhat makes

medical and health data sensitive?

Personal (identifiable) information + potential for harm or discrimination

Data sharing can be done safely and ethically

Plan to publish

Why would you share data??!

Data sharin

g

Discoverable and

citablePubs 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???

Data sharing landscapeFunders

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

International fundersMany are mandating data sharing

Journals

BMJ 2015;350:h2373http://journals.plos.org/plosone/s/data-availabilityhttp://www.icmje.org/news-and-editorials/M15-2928-PAP.pdf

Data sharing is on the horizon

Examples of published medical and health data

https://researchdata.ands.org.au/epidemiology-chronic-ankle-community-dataset/11149/

Plan to Publish

NHMRC Statement on Data Sharing (2016)https://www.nhmrc.gov.au/grants-funding/policy/nhmrc-statement-data-sharing

Planning to publish: you have choices 1. Metadata only2. Metadata plus mediated access3. Metadata plus open access

What is metadata?

• Location• Institutional repository• Discipline specific repository• General repository

Repositories

17

(search for repositories)

DOIUNI

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

Senior Research Data Specialistkate.lemay@ands.org.auands.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.