Flying Blind
The Australian Health Data Series

Flying Blind is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape.

in collaboration with

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:

  1. A harmonised process of data governance that provides a path from collection to researchers, and that ensures privacy and confidentiality are maintained
  2. Appointing organisations to act as data holding organisations for both structured and unstructured data
  3. Creating Accredited Release Agencies to build data collections suitable for research
  4. Privacy, Security, Confidentiality by Design
  5. Publicly accessible protocols so that all Australians can see how health data is used, and how it is making a difference.
  6. A single national data rich access point for researchers, that would also benefit the healthcare and health technology sectors.
Flying bind 2 cover download Researchers and Digital Health.

The blog posts are intended to be read in sequence. We welcome your comments, feedback and suggestions.

LATEST BLOG POSTS

Submitted by Cassie Quilty
CMCRC
14 May 2018

The Government’s response to the Productivity Commission’s Inquiry into Data Availability & Use is now available, one year after the Productivity Commission (PC) released its 658-page final report.

Submitted by Divya Ramachandran
CMCRC
19 Jan 2018

Our earlier blog posts highlighted the irony of numerous ethical reviews for the same research project, which makes us wonder about the validity of multiple opinions, besides creating huge administrative burdens and wasted time and costs for the researcher as well as the ethics committees themselves. This is especially the case in studies that evaluate service quality, interventions and outcomes, as they are required to follow patients across several hospitals, health services, local health districts and across jurisdictions, and call for utilizing data from different data collections.

Submitted by CMCRC
30 Oct 2017

Thanks to a billion-dollar annual investment in the Pharmaceutical Benefits Scheme (PBS) the bulk of Australia’s prescription medicine use is subsidised. One obvious benefit to this is that prescription medicine is more affordable for Australians. A less obvious benefit is that routinely collected PBS data provides comprehensive representation of prescription medicine use at a population level. This makes it an extraordinarily valuable data resource. The linkage of PBS, MBS and other Commonwealth collections, such as those held by the Department of Social Services, can expand our opportunities to explore value, real-world use and pivotal issues such as equity of access.

Submitted by Uma Srinivasan
CMCRC
20 Oct 2017

Service Delivery or Research -  A Case of Consent

Health and medical researchers are sensitive to the privacy, confidentiality and security of the data they collect or are provided with. In addition, they are most aware of the need for ethics approval(s) to use or gather data to conduct research and analysis. Indeed, a comprehensive understanding of data security, informed consent and ethical use is central to the professional life of a health and medical researcher. But the types of projects, and their data requests and analysis, are as diverse as the persons undertaking the research.  It is vital then that our governance policies and processes for data, ethics, consent and privacy are able to respond to these differences. In this blog we look at one example where this has not been the case.

Submitted by Nadia Levin
Research Australia
18 Sep 2017

In our previous blog, The Ethics Quagmire: Case Studies you might have read the case study by Kathy Tannous concerning the difficulties she has faced getting ethics approval from three ethics committees. But are there problems closer to home for researchers, in their own institutions, even when only one HREC is involved? We think so. But the solution may also lie with these institutions, in the better application of existing guidelines. We explain how below.