The Challenge
Clinical trials and health research generate a wealth of valuable data, including information about the research participants, their health, and their response to the interventions being studied. The data generated from these trials can extend beyond its original purpose, and can be re-analysed by secondary users to answer new research questions.
The ARDC’s Health Studies Australian National Data Asset (HeSANDA) program develops national infrastructure that supports the sharing of health research data for secondary research.
A key output of the HeSANDA program is Health Data Australia, an online catalogue that researchers can use to browse Australian clinical trials and request access to data from the data custodians.
However, there are various barriers that prevent the widespread use of secondary clinical trial data by researchers. These include a lack of awareness about resources, including Health Data Australia, and about the types of research that can be done using secondary data.
Further outreach and engagement activities are required to provide guidance and examples of the kinds of research that can be done using secondary data and to establish a community of practice of secondary data users.
The Response
The ARDC enlisted the expertise of secondary researchers from Cochrane to develop a framework that guides researchers on the types of research that can be undertaken using secondary clinical trial data. The framework was created in consultation with stakeholders and secondary data users, and provides examples, recommendations and limitations of using secondary data for different research topics.
Built on this framework, our partners have developed a series of helpful resources for secondary data users and data providers, including a user guide, case studies, and a webinar. These resources incorporate real-world examples that illustrate the benefits and impacts of engaging with secondary data, and provide practical guidance on its re-use.
These materials were published with an online survey to allow health research community members to provide feedback and highlight areas for improvement.
Additionally, the project contributed to the development of a roadmap to help establish a network of ongoing users of the Health Data Australia platform.
By promoting the impact and diverse uses of secondary clinical data, this project reflects the global shift towards data sharing to improve the transparency, integrity and productivity of health research.
Outcomes
The key outcomes of this project were:
- a secondary data use framework that outlines the kinds of research that can be undertaken with secondary clinical trial data
- communication materials (including a user guide and webinar) that offer practical guidance on limitations and requirements for undertaking research on secondary data
- case studies that showcase real-world data re-use scenarios
- a roadmap for creating a health research data community that could be supported by HeSANDA infrastructure.
Who Will Benefit
- researchers and research organisations
- data custodians
- health services
- healthcare professionals
Our Partner
- Cochrane Prospective Meta-Analysis Group (facilitated through the University of Sydney NHMRC Clinical Trials Centre)
Timeframe
Current Phase
Project lead
Categories
Research Topic
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