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

About

The CMCRC Health Market Quality Program

The Health Market Quality (HMQ) R&D program of the Capital Markets Cooperative Research Centre (CMCRC) covers the application of advanced data sciences to all public and private healthcare settings. The HMQ program delivers data analytics based solutions for healthcare funders, providers and consumers as well as robust and challenging research to drive improvements in Australia's health market. Furthermore, the HMQ program trains Australia's next generation of Health Data Scientists through our world-leading PhD programts. In short, the program aims to catalyse innovation from the rapidly emerging Digital Health environment.

The CMCRC recognises that the quality and completeness of health data is essential to:

a) Empower consumers to participate in managing their health and their interaction with the healthcare system, in a fully informed manner covering appropriateness of treatments as well as the cost and quality of service providers and healthcare products

b) Enable health policy management and funding organisations to plan, assess and operate high quality, cost effective healthcare services and facilities; and

c) Support the vital requirement for future-focused medical and health services research.

Flying Blind: The Australian Health Data Series is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape. Each volume is an in-depth investigation into different aspects and usages of this data.

Volume 1 - Australian Consumers and Digital Health focuses on the complexities of the consumer health journey and examines how data fragmentation is currently impeding the possibility of superior healthcare in Australia.

Volume 2 - Researchers and the Health Data Maze traces the health researchers’ journey in their ability to access data.

Volume 3 - to be published in 2018 will provide a view of health data from the perspective of funders, policy and regulatory agencies.

Flying Blind Volume Two

Flying Blind Volume Two: Researchers and the Health Data Maze is due for release in the second half of 2017. We’re very pleased to announce that the report is being researched and written in collaboration with Research Australia.

Our objective in this report is to examine the health and medical research data environment in its entirety.
This includes a review of:

• Health and Medical Research (HMR) data repositories in Australia (for example cancer registries, rehab registries, and 45 and Up Data) and their use by the research community
• Policies around HMR funding
• Policies regarding the conditions of research data access and use
• Current approaches to data ownership and custodianship
• Ethics Committee Processes
• Regulations around HMR data access, linking, and storage
• Policies around data reuse for research purposes

Our approach is to work with researchers and research bodies to understand the barriers preventing effective usage of health and medical data in Australia, and, in turn, examine best practice examples of research both in Australia and overseas. This will help us construct a set of recommendations regarding the design of a governance and infrastructure framework for research data: one which can enable access to research data in a manner which is both secure and efficient, and in doing so, streamline research processes and protocols, increase the transparency of research data sets and maximise the longevity and reuse of assembled research data sets whilst preserving privacy and confidentiality. In turn, we hope this framework will maximise Australian research capacity and productivity – all so that Australians can continue to benefit from the high-quality research that Australian researchers are known to deliver.

About the Blog
As we work towards the Volume 2 report, we’ll be uploading weekly blog posts to give interested readers a preview of what’s forthcoming, as well as an opportunity to provide us with feedback and thoughts as to what we’ve done well, what needs improving, and what topics or areas we might have missed. In time, these blog posts will form the basis of different chapters and sections of the final report. We welcome your comments feedback and suggestions.