Introducing Flying Blind 2

Introducing Flying Blind 2

Australia holds high quality digital
health data that could be of incredible value to health and medical researchers. In spite of the abundance of digital data, Australian health and medical researchers spend several months and even years to assemble data required for their research.

Research Australia’s annual consumer surveys demonstrate that Australian consumers are willing to share their health data to support research. However, this is not reflected in the current restrictive environment where researchers face a myriad of problems as they navigate a complex environment enmeshed in legislative, ethics and other barriers around data accessibility for research. Very often these obstacles result in long delays where research funding almost runs out, forcing many researchers to abandon linked data studies and make do with small data sets or seek overseas data banks to address their research questions.

Flying Blind 2 offers a way forward with a series of recommendations to enhance 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 Blind
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. Flying Blind 1 focused on the consumer health journey and released in 2016. Flying Blind 2 focuses on enhancing medical research through data access. It was released in November 2018. Volume 3 will provide a view of data from the perspective of funders, policy and regulatory agencies.

Flying Blind is a collaboration between the newly established Digital Health Cooperative Research Centre (CRC), the Capital Markets CRC and Research Australia.

The Capital Markets CRC has been transforming research for over 20 years. We apply world-leading research infrastructure and analytical expertise to global markets including finance, health, energy and digital finance. The aim is to make them all fairer and more efficient, thereby benefiting our partners.

The Digital Health CRC was announced in April 2018. It is a $200+ million opportunity to transform health delivery: improving health outcomes; reducing waste in the health system; building businesses and jobs.

Our 80-member organisations represent every segment of the health system from patient to community, hospital to insurer, start-up to big government.

Our researchers, from 16 universities, will work with our health partners to develop and test solutions that work for real patients in real hospitals and other settings of care. And our business partners will work alongside them to ensure that the solutions are scalable and implementable. We’ll develop them in Australia, then take them to the world.

Research Australia is the voice of health and medical research participants across the health and medical research pipeline. We have broad insight into what patients and consumers, funders, researchers and commercial groups can contribute and require from it.

Click here to view Flying Blind, a series of three reports: https://flyingblind.cmcrc.com/

Social Impact Investing for better health

Research Australia’s submission to Treasury in response to the discussion paper on Social Impact Investing has advocated that interventions designed to improve health outcomes be explicitly acknowledged as within the scope of the proposed social investing framework.

Research Australia believes that Social Impact Investing could be an effective mechanism for funding and evaluating some pilot projects and clinical trials designed to implement and evaluate new evidence based practices and interventions. The benefits of implementing successful new interventions include better population health, improved patient care, and efficiency gains in the Australian healthcare system. These provide quantifiable social and financial gains that make the funding of these measures amenable to Social Impact Investing.

Research Australia Submission Social Impact Investing

Federal Medical Research Plan: The Health & Economic Roadmap We Need

Media Release: Wednesday, 9 November 2016

Link to the MRFF Strategy & Priorities.

With almost two in three Australian adults and one in four children overweight or obese, two-thirds of Australians over the age of 50 with poor bone density, and one in six Australians with chronic back pain, tonight’s release of the Medical Research Future Fund (MRFF) Strategy sets out the roadmap for addressing some of our biggest health issues.

That is the verdict from the medical research community and Research Australia, the organisation behind the virtual doubling of health (NHMRC) funding in 2000, and again in 2005.

“As the organisation that has been championing health and medical research for the last 15 years, we can tell you the MRFF is a real game changer,” said Research Australia Chair, Dr Christine Bennett.

CEO of Research Australia, Nadia Levin said the MRFF Strategy’s vision of a health system informed by quality research is exactly what’s needed.

“Research Australia shares the Strategy’s vision of a health system fully informed by quality health and medical research,” said Levin.

Continue reading “Federal Medical Research Plan: The Health & Economic Roadmap We Need”

People care more about emergency room wait times than research right? Wrong. New research Australia poll

Media Release: Thursday 6 October 2016

For more than a century, standard care for heart attacks – one of the biggest causes of death in Australia – was the use of supplementary oxygen.

That was until recently, when Australian research demonstrated that in some cases, supplemental oxygen was actually causing harm – increasing heart injury, and dangerous cardiac rhythms.

Now, thanks to the widespread application of these results, the response to heart attacks has been drastically changed both here in Australia, and around the world.

Against the backdrop of examples like this, it’s unsurprising that a new poll has found some 88 per cent of people rate ‘research’ as the most important opportunity to improve our health system.

Continue reading “People care more about emergency room wait times than research right? Wrong. New research Australia poll”

New Poll: Australian’s will share their personal health data if privacy protected

Media Release: Wednesday, 7 September 2016

Some 91 per cent of Australians would be willing to share their de-identified medical data if it went towards research purposes.

That’s just one of the important findings from a Roy Morgan Research poll conducted on behalf of Research Australia as part of their annual national Australia Speaks study.

“What scientists and researchers need is data to develop new treatments and to track changes in the rise and fall of diseases over time,” said Research Australia CEO, Nadia Levin.

Continue reading “New Poll: Australian’s will share their personal health data if privacy protected”