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.


Submitted by Uma Srinivasan
24 Aug 2017

In Flying Blind 2, we have been highlighting the tortuous route of the researcher’s journey, as they negotiate the ethics processes and the myriad data sources required for their research. In the next few blogs, Australian health and medical researchers who have been through the journey, present real-life case studies and  back-of-the-envelope calculations of what it takes to identify existing data sets and negotiating the ethics processes, to link the data sets to support their research.

What is sad for Australian health research is that these numbers do not reflect reseachers' time spent in actually performing research!

We hope the case studies will shine a light on the complexities and the lack of efficiency and transparency around tapping into de-identified pre-existing administrative data sets from multiple states and federal health data sources.

Submitted by Cassie Quilty
01 Aug 2017

“How are you going to get the government to implement this, particularly since we are liable to have a change in government in September and it could be back to the beginning, Groundhog Day.” Norman Swan, interviewing members of the McKeon Review Panel in 2013.

Submitted by Cassie Quilty
19 Jul 2017

In January 2016, National Health and Medical Research Council (NHMRC) CEO Professor Anne Kelso announced a review of the structure of NHMRC’s grant program. The review aimed to determine if restructuring existing programs could optimise the significant public investment (approx. $800 million per annum) disbursed through NHMRC grant programs. Government funding for NHMRC programs quadrupled between 2000-1 ($185 million) and 2010–11 ($750 million). This increased investment produced major benefits to the health and medical research (HMR) sector in terms of size and productivity. However, the corresponding increase in volume of grant applications presented an ‘unsustainable burden’ for reviewers and researchers with overall success rates reaching historic lows.

Submitted by Uma Srinivasan
05 Jul 2017

Data is the primary resource - the life blood -  that drives evidence-based health and medical (H&M) research.  Traditionally, data collected explicitly for a clinical trial, designed to answer specific questions on behavioural or bio-medical questions, served as the primary research data for H&M researchers.  This practice started when administrative health data was not readily available in computable electronic format.  However, in the current digital health environment, administrative health data collected and aggregated in electronic form has become a veritable gold mine for stakeholders in the healthcare environment. As a consequence, administrative data is increasingly becoming the primary data source for many H&M researchers.

The purpose of collecting administrative health data are manifold:

Submitted by Greg Mullins
Research Australia
21 Jun 2017
My health record badge

Could you tell the triage nurse in the emergency department all the medications your elderly parent is taking? Before you go to Bali this winter, do you know whether you’ve ever been vaccinated against hepatitis A? And what was the name of that antibiotic you were allergic to years back?

All this information exists, most likely in the files of a GP or specialist, or a hospital you went to for treatment a couple of years ago. It is probably even stored electronically, but can you get it when you need it?