Samantha Robertson - NHMRC Perspectives on Increasing Access to Data from Publicly Funded Research
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Transcript of Samantha Robertson - NHMRC Perspectives on Increasing Access to Data from Publicly Funded Research
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
• 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
Context for data sharing • Big Data
• The life cycle of research
• Promoting integrity
• Reducing research wastage
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
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.
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
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
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.
Proportion of publications linked to NHMRC funding support within each sub-field 2005–2009
Proportion of Australian biomedical publications by sector of contributing author(s), split by NHMRC funding support, 2005–2009
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.
Context: Data and the life cycle of research
• 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
So what about genomics?
• Genomics is a Big Data science
• research relies on aggregating and analysing large amounts of DNA sequencing and health data
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?
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
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
Samantha Robertson Acting General Manager