We’ve already had a look at the vast array of different problems associated with attempting to track Australian health and medical research (HMR) spending. We’ve also explored the hoops that researchers have to jump through when they apply for grants or seek to gain approval from ethics committees, not to mention when they make requests for access or linkage from custodians and data gatekeepers. One might be tempted to think that no matter where Australian HMR researchers turn, the data they need is locked behind bars that are almost impossible to open – so much so that it almost takes a special kind of resilience to finish their projects.
Flying Blind 2
Flying Blind 2 offers a way forward with a series of recommendations to enhance health and medical research in Australia, saving lives and saving dollars. The report proposes:
- A harmonised process of data governance that provides a path from collection to researchers, and that ensures privacy and confidentiality are maintained
- Appointing organisations to act as data holding organisations for both structured and unstructured data
- Creating Accredited Release Agencies to build data collections suitable for research
- Privacy, Security, Confidentiality by Design
- Publicly accessible protocols so that all Australians can see how health data is used, and how it is making a difference.
- A single national data rich access point for researchers, that would also benefit the healthcare and health technology sectors.