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

samantha.robertson@nhmrc.gov.au