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A national dataset for chronic conditions would provide critical information for enabling research and improving health outcomes, write Andrew Giles, Rohan Greenland and David Ali.
There is no existing comprehensive dataset for neurological conditions in Australia, leading to considerable gaps in knowledge that limits research opportunities.
A national neurological conditions dataset refers to a comprehensive collection of data that is specifically focused on neurological conditions, such as Parkinson’s disease, multiple sclerosis (MS) and motor neurone disease, as well as rarer conditions, such as leukodystrophy and Machado–Joseph disease.
It includes information about the incidence and prevalence of these conditions, as well as patient demographic characteristics, risk factors, treatment options and health outcomes. The dataset could also include information about hospitalisations, accidents and emergency presentations, contribution to deaths, burden of disease and economic impact.
Benefits of a national neurological conditions dataset are wide ranging and would mirror those for other chronic conditions:
- Improved public health outcomes: With accurate data, health care professionals, researchers and policy makers can develop evidence-based interventions and policies to improve health outcomes for people with chronic conditions.
- Better monitoring and evaluation: Data collected in a national dataset can be used to monitor and evaluate the effectiveness of these interventions and policies.
- Increased understanding of the burden of chronic conditions: Information about the incidence and prevalence of chronic conditions enables better understanding of the overall burden of these conditions on the population and the health care system.
- Improved resource allocation: With a comprehensive dataset, policy makers can make informed decisions about how to allocate resources, such as funding for research and treatment, to areas where they are needed most.
- Identification of health disparities: By tracking data on chronic conditions at the national level, health disparities can be identified and addressed, helping to ensure that all individuals have access to high quality care regardless of their race, ethnicity, geographical location or socio-economic status.
Overall, existing national datasets for chronic conditions, such as epilepsy, diabetes and musculoskeletal conditions, provide critical information for improving health outcomes and informing public health decisions. Having a comprehensive, up-to-date national neurological conditions dataset would help advance our understanding of these conditions and improve the lives of those affected by them.
Can registries provide this information?
Registries for particular conditions can provide very valuable data, and several neurologically focused registries exist in Australia. However, the data collected are not consistent nor standardised across conditions. A neurological conditions dataset will provide a more consistent approach across a range of conditions that is not targeted to the specific needs of any particular condition. The data are collected independently and, unlike some registries, are not reliant on voluntary patient self-reporting.
Australian registries that focus on neurological conditions and collect the information specified include:
- Australian Stroke Clinical Registry — demographic characteristics, treatment and management, and outcomes for patients with stroke;
- Parkinson’s Australia — prevalence, incidence and natural history of individuals with Parkinson’s disease;
- Australian MS Longitudinal Study — epidemiology, diagnosis and treatment of individuals with MS;
- Epilepsy Society of Australia — epidemiology and natural history of individuals with epilepsy;
- Brain Injury Australia — incidence, prevalence and outcomes of individuals with acquired brain injury;
- MSBase — patient demographics and other disease statistics for patients with multiple sclerosis across a combined real-world pool of data; and
- MiNDAUS (Australian MND Registry and Sporadic ALS Australian Systems Genomics Consortium) —demographic characteristics, incidence, genetics data, disease progression information, health service usage, treatment utilisation.
Much larger registries that focus on neurological conditions exist across European countries (eg, the EUROSTROKE Project, the European Huntington’s Disease Network, the European MS Platform) and there are many global registries that collect data on stroke, epilepsy, Huntington’s disease and more.
These registries provide valuable information on the neurological conditions on which they focus. They play an important role in advancing our understanding of these conditions and improving the lives of those affected by them. In addition, by collecting data from a global population, the international registries can provide insights into the diversity of the conditions and how they are experienced by people from different regions and cultures.
Registries tend to exist for conditions where there are large cohorts with established peak bodies that have the resources and capacity to establish them. For rarer conditions with smaller cohorts, resources and capacity are considerably limited.
Who is best placed to provide a national neurological dataset?
The Neurological Alliance Australia (NAA) is a collective of not-for-profit peak or national patient organisations representing adults and children living with progressive neurological or neuromuscular conditions or neurological disorders in Australia. The NAA works collaboratively to identify and advocate for opportunities that will promote improved quality of life for people living with these conditions and funding to support research. One of the core objectives is to establish a national neurological conditions dataset.
The Australian Institute of Health and Welfare (AIHW) is best placed to collect and report this information as it does for a range of other chronic conditions, such as cardiovascular disease and diabetes.
Taken as a whole, there appear to be significant gaps across the entire neurological disease group, with some clear exceptions where there has been strong investment in addressing gaps, such as dementia (in adults) and epilepsy.
Notably, the recent World Health Organization Global Action Plan on Epilepsy and Other Neurological Disorders 2022–2031 includes a focus on data and information systems, with a list of actions for Member States, namely:
“212. Integrate monitoring of neurological disorders into routine information systems and across all levels of care and identify, collate, routinely report and use core data, disaggregated by sex, age and other equity measures in order to improve neurological care service delivery, promotion and prevention strategies and provide an understanding of the social determinants of neurological disorders.
213. Analyze and publish data collected on the availability and evaluation of utilization and coverage of services and effective treatments for neurological disorders to improve care and delivery of programmes.”
In light of this call to action from the WHO and the significant data gaps for neurological conditions in Australia, the NAA is very keen to address these gaps.
Representatives of the NAA and the AIHW met in November 2022 to discuss the possibility of the AIHW progressing a national neurological conditions dataset. The AIHW advised that the first steps are to undertake two essential projects:
- a scoping study that comprises a short report reviewing and assessing Australian data sources for neurological conditions across the lifespan, including identifying gaps and opportunities for data improvements pertaining to the topics of interest; and
- a data report on neurological conditions in Australia that would include the latest available data.
The outcomes from these projects would help to guide the future monitoring of neurological conditions. The AIHW has recently undertaken a similar project with the creation of the National Centre for Monitoring Dementia, which was established to undertake a range of data improvement activities. This included equivalent initial projects, followed by implementation of an ongoing monitoring and reporting program for dementia in Australia.
The NAA is committed to advocating for a national neurological conditions dataset. The planning phase of carrying out a scoping study and data report to establish a comprehensive national neurological conditions dataset in Australia has commenced. This will lead to improvements in health outcomes for people of all ages living with a diverse range of neurological conditions.
To read more about the membership and work of the NAA, please visit: https://neurologicalalliance.org.au/
Rohan Greenland is the Chair of the Neurological Alliance Australia, Chief Executive Officer of MS Australia and a member of the managing committee of the International Progressive MS Alliance.
David Ali is the Deputy Chair of the Neurological Alliance Australia, Chief Executive Officer of MND Australia, and Vice Chair of the International Alliance of ALS/MND Associations.
Andrew Giles is the Executive Officer of the Neurological Alliance Australia.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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