Reflecting on the challenges associated with gaining access to population level datasets in Australia for Health and Medical Research, the PRedicting the population health economic IMpact of new and current CAncer Treatments (PRIMCAT) program proposes key principles for improving access to important research-enabling datasets.
Australian researchers have discussed and proposed multiple ways to improve access to research data, yet the utility of data to drive meaningful change, potential legislative barriers, privacy concerns and fears about the transparency of outcomes have prevented widespread use. We therefore need a new approach to facilitating data access, and we take the position that Australia can learn from international best practices to improve health outcomes and improve health systems responsiveness.
Improving access requires a RADICAL approach
With access to data becoming a competitive advantage for the digital transformation and sustainability of health, it is essential we develop streamlined and transparent pathways for data requests and access. This can only be achieved in collaboration and with the aim to share data and results to make the health system future proof for the benefit of our patients. We propose a RADICAL approach to achieve this: research data that is Representative, Accessible, Documented, Integrated, Consistent, Affordable and Leverageable is essential to realise the promise of data-driven research.
Conclusions
A modern and competitive health system requires a digital strategy that should include a streamlined approach to obtaining high-quality data. While the process of accessing data should be transparent and efficient, the responsibility of the requestor is a transparent reporting of the outcomes for the public benefit.
There is a critical interplay between the research community and data custodians to develop a trustworthy relation regarding the use of the data within legislative and privacy regulations. Through our contribution, we would encourage better use of the available datasets and discuss the RADICAL principles in the attempt to increase data-driven research.