Governments and industries all over the world are tackling the challenges and opportunities of ‘Big Data’. In view of these challenges, the key drivers of change in this area are the behaviour of researchers, the introduction of incentives or rewards and funding for data sharing infrastructure. Governments and taxpayers also expect a return on investment from the money spent on publically funded research. Building on and learning from the successes (and failures) of others need to be part of the research vernacular. Issues such as open access, data curation, handling of data, and sharing of that data are all matters on which the National Health and Medical Research Council (NHMRC) has an interest in. NHMRC works with the sector to develop best practise policies on such matters. Samantha Robertson Executive Director, NHMRC Evidence, Advice & Governance Presented at the 2015 Wiley Publishing Seminar, 5 November, Melbourne, Australia.

1. Wiley Publishing Seminar: Global Trends in Research Publishing
NHMRC Perspectives on Increasing Access to
Data from Publicly Funded Research
Thursday 5 November 2015
Samantha Robertson

2. • Australian Government’s peak funding body for
health and medical research
• Develops evidence-based health advice for;
– the Australian community
– health professionals and
– Governments
• Provides advice on ethical practice in health care
and in the conduct of health and medical
research
Functions of NHMRC

4. Context for data sharing
• Big Data
• The life cycle of research
• Promoting integrity
• Reducing research wastage

5. Opportunities
• Reducing wastage and improving reuse
• Enhanced transparency and reproducibility
• Improved quality of research
• Maximises the benefits from limited resources
or research funding
• e.g. enhances available population-based data for
Indigenous health research
• Data repurposing
• Data linkage for further discoveries

6. Context: ‘Big data’
“high-volume, high-velocity and/or high-variety
information assets that demand cost-effective,
innovative forms of information processing for
enhanced insight, decision making, and process
optimization.". (AGIMO)
Governments are trying to help scientists to
capitalize on the big data being generated by
research communities, particularly in the context of
open access policies.

7. Reproducibility of research
• Researchers and the community accept
published research as fact
• This is dependent upon confirmatory
research work
• Failures to reproduce early research
findings and uncorroborated research, have
significant consequences

8. Non-reproducible research findings:
• inappropriate gender selection in both
human and animal subjects
• inadequate study power
• poor choice of model systems
• use of outmoded technical approaches
• inadequate review of the existing literature
• drawing inappropriate conclusions from the
study

9. NHMRC Open Access Policy
Any publication arising from NHMRC supported
research must be deposited into an open access
institutional repository and/or made available in
another open access format within a twelve month
period from the date of publication.

10. Proportion of publications linked to NHMRC funding support within each sub-
field 2005–2009

11. Proportion of Australian biomedical publications by sector of contributing
author(s), split by NHMRC funding support, 2005–2009

12. NHMRC Active Project grants with International Collaborative Links *
COUNTRY
# ACTIVE
GRANTS
2015 TOTAL GRANT
EXPENDITURE
COUNTRY
# ACTIVE
GRANTS
2015 TOTAL GRANT
EXPENDITURE
USA 222 $50,210,389 SPAIN 7 $1,630,000
UK 138 $35,255,028 IRELAND 6 $2,033,448
NEW ZEALAND 54 $15,426,216 PNG 6 $1,604,551
CANADA 50 $11,035,157 FINLAND 5 $922,023
GERMANY 32 $6,913,137 HUNGARY 5 $1,092,777
SINGAPORE 29 $7,203,713 MALAYSIA 5 $1,483,292
NETHERLANDS 20 $4,699,785 AUSTRIA 4 $715,193
SWITZERLAND 14 $3,224,950 HONG KONG 4 $1,778,332
BELGIUM 11 $2,338,771 NORWAY 4 $768,027
DENMARK 11 $2,273,779 SWEDEN 4 $1,077,990
JAPAN 11 $4,336,477 VIETNAM 4 $1,498,870
CHINA 10 $4,498,241 BANGLADESH 3 $987,013
FRANCE 10 $2,024,720 KUWAIT 3 $1,129,362
ITALY 10 $2,576,524 PHILIPPINES 3 $1,175,176
THAILAND 9 $1,942,956 SAUDI ARABIA 3 $592,851
INDIA 8 $3,075,968
Other
(13 countries)
15 $4,632,219
* Project Grants with international collaboration, active as at mid-September 2015. Note that individual Project Grants may have more than one international
collaboration such that the total number of collaborations and funding amount is not equal to the total grants and amount of funding.

13. Context: Data and the life cycle of research

14. • Encouraging data sharing of NHMRC-supported
research through the NHMRC Statement on Data
Sharing
• Providing guidance to ensure best-practice access
to data by developing the NHMRC Principles for
Accessing and Using Publicly Funded Data for
Health Research
NHMRC’s role in data sharing and access

15. So what about genomics?
• Genomics is a Big Data science
• research relies on aggregating and analysing large
amounts of DNA sequencing and health data

16. Data in ‘omics’
• The bioinformatics challenge
• Currently…
– Data is in silos: by disease, institution, platform;
– Regulation and informed consent: the need to
share was not anticipated; and
– Informatics capabilities: non‐standardised
• Global Alliance for Genomics and Health (GA4GH)
– what is it’s main remit?

17. Challenges
Legal and ethical issues
− Privacy and data protection
− Business-commercial / intellectual property issues
− Potential for unintended uses / misappropriation
Infrastructure and technology
− Storage, preservation, accessibility and discoverability
− Interoperability
− Security
Data and metadata quality
─ Fitness for purpose and quality
─ Data heterogeneity
─ Lack of systematic methods and standards for collecting and storing
data
Stakeholder relationship

18. What do we need to do from here?
• Change perceptions and behaviour
• Consider incentives and rewards for researchers
to share
• Develop mechanisms and infrastructure to
support data sharing (including funding)
• Develop principles and standards for the
collection, access and sharing of research data

19. Samantha Robertson
Acting General Manager
samantha.robertson@nhmrc.gov.au