Researchers and policymakers often utter the words ‘even if the datasets exist we can’t easily access them.’ That sentiment, and experience, is what the LINked Data Asset for Australian Health Research (LINDAHR) project set out to turn on its head.
Supported by ARDC co-investment through the National Data Assets initiative, a team of 25 organisations has now secured streamlined researcher access to national linked health datasets from the Australian Institute of Health and Welfare (AIHW). The AIHW’s National Health Data Hub (NHDH) – previously known as the National Integrated Health Services Information (NIHSI) analytical asset – includes longitudinal de-identified person-based records for hospitalisations, emergency department, aged care services, Medicare services, subsidised medicines, immunisations, deaths, and some social determinants of health.
The project has also opened the doors to future additions of high-value health, medical and social datasets. This is thanks to the underlying governance framework and infrastructure of the AIHW’s linkage system.
Many people do not think about the time and cost it takes researchers to access data, and what that means for ensuring health policies are based on robust evidence and taxpayers. The impact from LINDAHR is already significant and will have long-term savings and benefits. The savings can be invested in more research, and vital research questions can be answered more quickly for better health outcomes.
In the past, it took about 3 years for researchers to complete the data access process. According to Professor Claire Vajdic of UNSW, who led the LINDAHR project, the time alone costs $80,000. Datasets were then accessed only for individual projects: other projects by the same institution would require another application and, therefore, more time and data linkage costs.
“Researchers used to have to follow a very cumbersome, wasteful and costly path. This process now takes a matter of months,” said Prof Vajdic.
“It’s now a single ethics application and a single governance application to AIHW. It’s been wonderful to see the collaboration create fundamental changes in the way researchers can access data. The state and territory governments as well as the Australian government have agreed to a simplified process. Common ground has been found to everyone’s benefit,” she said.
Researchers can access the core government administrative health and aged care datasets, knowing they will be there long-term and updated regularly. The data is anonymised and stored securely with multiple privacy and confidentiality safeguards in place, and the fee structure is transparent.
Applications of LINDAHR are wide-ranging, including research into cancer and chronic diseases. Another important area to society is aged care. According to Emeritus Professor Julie Byles of the University of Newcastle, who advised on the LINDAHR project, understanding what care is needed at what time has a huge impact on individuals’ quality of life and life expectancy.
“In earlier research, we have identified patterns of care where most people use a small number of services with a rapid rise in all service use in the last years and months of life. We have also identified that earlier community aged care use can delay permanent residential care,” said Prof Byles.
“We’ve already seen impacts from better data. These include an increase in aged care places and the Home Care Workforce Support Program, which aims to increase the availability of home care by boosting the workforce. We can now also see bottlenecks more easily, a new one being protracted wait times for assessment. This is why we need linked up data that show the pathways, time lags, and stumbling blocks, as well as the benefits and outcomes,” she said.
Prof Vajdic is excited by future possibilities now that LINDAHR has achieved its goals, including integrating more administrative datasets, high-value cohort studies, clinical quality registers and large-scale clinical trials.
“A focus will be datasets that enrich the amount of clinical and socio-demographic information available. We’ll be able to generate increasingly sophisticated and actionable evidence on health care and outcomes, including for priority population groups such as people with socioeconomic disadvantage and people with disability,” said Prof Vajdic.
“There’s ongoing work to improve data processing and further streamline our data systems to reduce lag times. We now have a solid foundation and are in a far stronger position to detect and respond to emerging health risks.
“When researchers, government agencies and health service providers can better understand the impacts of disease and illness on our health system and health outcomes, this ultimately improves and saves lives,” she said.
Thanks to the LINDAHR project, researchers can request access to the National Health Data Hub (NHDH) linkage system from AIHW. It currently includes the following datasets:
Learn more about the LINDAHR project and its outcomes.
The ARDC is funded through the National Collaborative Research Infrastructure Strategy (NCRIS) to support national digital research infrastructure for Australian researchers.
Written by Claire Harris (Innovate Communicate). Reviewed by Professor Claire Vajdic (UNSW), Emeritus Professor Julie Byles (The University of Newcastle), Caitlin Szigetvari (AIHW), Catherine Brady (ARDC) and Jason Yuen (ARDC)
