One of NHMRC’s primary roles is to fund high quality health and medical research and ensure that the Australian community receives the health and economic benefits from that investment. An important part of this responsibility includes enabling researchers and members of the community to access the outputs of research.
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.
This aligns with researchers’ responsibilities under the Australian Code for the Responsible Conduct of Research (2007), which provides advice on the storage, management and privacy of research data (section 2.5-2.7) and states: “Research data should be made available for use by the other researchers unless this is prevented by ethical, privacy or confidentiality matters.”
Below is a general guide for researchers to consider data and metadata management when planning and conducting research. This document will be updated periodically to reflect new input and information.
How to share research data – Practice and limitations
NHMRC encourages researchers to disseminate and share their research data through publicly accessible databases or repositories. However, NHMRC understands that the level of detail in which data could be shared may be limited by a wide range of factors (e.g. ethics (particularly consent), legal, IP). In addition to ethical-legal limitations, other limitations may also exist (e.g. data format and standards, variable ontologies used to describe data). 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 infrastructure and mechanisms for data sharing are currently available through individual institutions (e.g. Universities, Medical Research Institutes), government repositories (e.g. data.gov.au), international repositories (e.g. Dryad, arXiv), established networks (e.g. Population Health Research Network, Research Data Storage Infrastructure) or nationwide registry and data organisations which offer varying levels of support (e.g. Australian National Data Service, Biogrid, Intersect). Publishing citable protocol or data papers, or making data available through institutional websites or repositories under Creative Commons license arrangements, or other collaborative databases are also avenues for data and research output dissemination.
When to plan for sharing research data – A life-cycle approach
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. Key areas to consider when planning for data sharing include:
- Ethics (particularly consent and privacy),
- Data storage and accessibility, including protection of privacy, cost and the viability of long-term storage, and
- Data quality frameworks and standards.
One approach to planning for data sharing is to consider data at each stage of the research lifecycle – see Figure 1.
In order to maximise the utility of data and biospecimens collected for NHMRC-funded research, NHMRC encourages researchers to use the broadest consent that appropriately considers “the codes, laws, ethics and cultural sensitivities of the community in which the research is to be conducted.”(National Statement on Ethical Conduct in Human Research 2007 (National Statement)). Obtaining data or biospecimens with ‘extended’ or ‘unspecified’ consent (see section 2.2.14-2.2.18 of the National Statement) helps avoid duplication in research effort and enables faster uptake of new platforms or technologies.
Figure 1 – Data during the research life-cycle. In the lifecycle diagram above, stages essential for all health and medical research are represented in blue, whilst additional research type specific processes are indicated in green.
Research designs that incorporate data sharing during early stages of the life-cycle, such as when planning and budgeting research and obtaining research approvals, are more likely to have high quality data sharing strategies, with data stored in accessible formats. The Australian Research Council, through the Australian National Data Service also “encourages researchers to consider the ways in which they can best manage, store, disseminate and re-use data generated through ARC-funded research” (www.ands.org.au). Whilst early planning enables data sharing it also has direct benefits to the researcher. 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. For example, researchers who have planned for data sharing are able to appropriately publish their datasets and other outputs (including metadata, analysis code, and study protocols) once the research has been conducted.
There are still opportunities to consider sharing of research data in later stages of the lifecycle. In some studies it may be possible to contact research participants to expand their consent (see section 2.2.8 and 2.2.14-2.2.18 of the National Statement). When contacting study participants isn’t possible there may be information that researchers can share, such as metadata, analysis code, study protocols and study materials. Publishing this information assists with research reproducibility and minimises research wastage.
Irrespective of how or when in the research lifecycle a researcher considers implementing data sharing, there are ways of making data and other research outputs available that enhance community access to research outputs, improve research reproducibility and minimise research wastage.
Data accessibility and quality
Discipline-specific national and/or international standards are in place, or under development, to ensure that shared data is of high quality. Below are some examples of Frameworks and Standards which NHMRC has participated in developing and/or implementing. Researchers may find these informative when planning their research.
Global Alliance for Genomics and Health
Framework for Responsible Sharing of Genomic and Health-Related Data
International Cancer Genome Consortium
Global sharing of ICGC data
Sharing research data to improve public health: full joint statement by funders of health research, including NHMRC.
NHMRC would welcome information about other relevant Standards and Frameworks that would assist researchers in preparing their research data for sharing. Please send feedback and comments to firstname.lastname@example.org.