Supporting Clinical Quality Registries – towards a national strategy

Clinical Quality Registries (CQRs) collect and use data about patients’ treatments to improve the delivery of healthcare. CQRs already play a vital role in helping Australia deliver safer, higher quality healthcare, but the approach to CQRs in Australia is ad hoc and fragmented. The Australian Commission for Safety and Quality in Healthcare has been working for more than a decade to improve this situation and the Australian Government has recently released a draft National CQR Strategy for the next 10 years.

Research Australia made a submission in response to the Draft Strategy, welcoming the progress being made in this area, and making suggestions for how the Draft Strategy could be improved. These include broadening the focus from the clinician/patient relationship to capture other patient interactions with staff that affect health care. Accreditation of CQRs and a sustainable national funding model with the support of state and territory governments are also critical elements for the Strategy.

Research Australia’s submission is available here.

The Commonwealth Department of Health subsequently released the final National Clinical Quality Registry and Virtual Registry Strategy 2020-2030 in February 2021, available here. The nomination of key target areas for CQRs and a sustainable funding model for these are no longer part of the Strategy, although funding for key areas is still likely, possibly from the MRFF.

Supporting Data Sharing and Release

The Productivity Commission has recommended that if Australia is to make better use of Government held data, including for research purposes, the law needs to be changed. The Government has acted on three key recommendations of the Productivity Commission in its proposal for new Data Sharing and Release legislation. This includes providing a new framework and guidance for the release of data by Government departments and agencies; creation of a new National Data Commissioner (NDC), to oversee the Framework and champion the release and use of data; and the creation of accredited ‘trusted users’ to facilitate access to data by researchers.

Research Australia’s submission is broadly supportive of the proposals in the Paper but has suggested an expanded role for the NDC and raised some concerns about how the accreditation of ‘trusted users’ will be implemented. The Department of Prime Minister and Cabinet has committed to further consultation and we await the development of draft legislation by the end of 2018.

Research Australia’s submission

My Health Records for research

With the My Health Record gaining wider acceptance, the Australian Government has commenced a consultation on how this data should be used in future for research and public health purposes. The challenge is to establish a Framework that adequately protects individuals’ identities without unnecessarily restricting who can access the data for research purposes, how they can use it, and the time it takes to get access. This is the balance that Research Australia’s submission emphasises- datasets should be as available as possible to researchers, subject to adequately protecting individuals.

The consultation paper on the Framework ruled out the use of My Health Record data for commercial purposes, which is contrary to Government policy as outlined on the Australian Government Public Data Policy Statement. Another complication is that the Framework is being developed in advance of the Government’s response to the Productivity Commission Report on Data Availability, which has proposed a range of significant changes including creating a new National Data Custodian and allowing ‘trusted researchers’ to access identified data. Research Australia’s submission has emphasised the need for the Framework to be forward looking, so as to accommodate future developments is what is a fast moving policy area.

Research Australia’s submission

2017 Data Innovation Award Winner: Professor Helmut Butzkueven

The Data Innovation Award award is presented to an individual or team that has developed the most innovative method of gathering, making available, processing or interpreting
data in a way that advances health and medical research.

Congratulations to Award Winner: Professor Helmut Butzkueven

Continue reading “2017 Data Innovation Award Winner: Professor Helmut Butzkueven”

Reducing Hip Fractures with data

Falling over and breaking any bone, let alone your hip, is not something any of us wants to think about, but it is all too often the reality for older people, with serious consequences.

One in 20 older hip fracture patients will die before they leave the hospital; one in 10 aren’t able to go home and instead transfer to an aged care facility, and more than half are still unable to walk after 12 months.

Continue reading “Reducing Hip Fractures with data”

Research Australia’s Collaborative Strategy

Research Australia’s Collaborative Strategy and Focus Areas are now available for you to download and share.

Our vision

Health and prosperity through Australian research and innovation.

Our mission

Maximise the impact of all stages of health and medical research and innovation.

Our goals

Championing Australian Health & Medical Research

Research Australia is the national peak body for Australian health and medical research. We were set up by the federal government 22 years ago to support all stages of the health and medical research pipeline – universities, research institutes, commercial, consumer, health systems and charities.

Our Voice

Using our collective voice we represent the sector’s interests to government and convene different parts of the research community to affect policy change that benefits Australian health and medical research.

Your Innovation

We work to support and promote the incredibly talented Australian health and medical research community. Utilising our expertise we connect the entire national health and medical research (HMR) ecosystem, strengthening the bonds between academic organisations, the commercial sector, health systems and philanthropy. Together we can improve health outcomes for all Australians.

The Australian Health Data Series

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.

CMCRC in collaboration with Research Australia is currently working on the second report which examines Australia’s health and medical research data environment and traces the difficulties that Australian researchers face at each stage of their journey as they attempt to access research data. Volume One dived into consumers and digital health through the patient journey, service fragmentation, health data silos, legislation, regulation and policy and consumer concerns and perceptions.

As we write Volume Two: Researchers and the Health Data Maze, we’ll be publishing regular blog posts of interest to this topic. The blog is updated regularly by members of the CMCRC’s Health Market Quality program and Research Australia. If you would like to be a guest blogger please email Lucy Clynes with your expressions of interest.

Bookmark this website today: https://flyingblind.cmcrc.com/researchers-health-data.
Continue reading “The Australian Health Data Series”

2016 Data Innovation in Health & Medical Research Award Winner: Capital Markets CRC

Research Australia
Health & Medical Research Awards

2016 Data Innovation in Health & Medical Research Award

Presented to an individual or team that has developed the most innovative method of gathering, making available, processing or interpreting data in a way that advances health and medical research. This new Award is being presented for the first time in 2016.

Congratulations to Award Winner: Capital Markets CRC, Health Market Quality Team

Continue reading “2016 Data Innovation in Health & Medical Research Award Winner: Capital Markets CRC”

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”

Public Sector Data Availability and Use

The Productivity Commission is undertaking an Inquiry into the availability and use of public data. Research Australia’s submission in response to the Issues Paper emphasises the importance of improved access to public data as a means of facilitating Australian health and medical research. It highlights the importance of linked datasets and identifies a number of cultural and legislative barriers to the greater use of data for research purposes. It also provides some case studies and makes some recommendations for improvement.

Data Availability and Use