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This article was first published on Wednesday, October 11, 2023
Introduction by Croakey: The needs of people with long COVID are not being adequately addressed, and more must also be done to prevent the condition, according to a new policy brief by the Australian Healthcare and Hospitals Association’s Deeble Institute for Health Policy Research.
Below, Adjunct Associate Professor Rebecca Haddock, Executive Director Knowledge Exchange, and Breanna Weigel, Deeble Summer Scholar at the Australian Healthcare and Hospitals Association, discuss the brief’s key findings, including recommendations for improving policy and services.
Rebecca Haddock and Breanna Weigel write:
Long COVID is a growing public health challenge.
As a newly emergent chronic, multi-systemic illness and post-infectious health outcome of COVID-19, long COVID has affected more than one in 25 Australians and left more than 1.5 million at risk of long-term chronic illness.
Additionally, as the proportion of Australians who have been exposed to COVID-19 continues to rise, so does the increased risk of developing long COVID.
Given that long COVID has a profound impact on functioning and daily life for people living with the condition, it seems reasonable then that resources are appropriately allocated within the community and across the health system to meet demand.
Ideally, this should include the coordination of multidisciplinary services, including primary, specialist, and allied healthcare, as well as disability and social support.
However, as examined in an Issues Brief published by the Australian Healthcare and Hospitals Association’s Deeble Institute for Health Policy Research, the true burden of this condition on our healthcare system is not well understood and potentially underestimated, resulting in the care and support needs of Australians with long COVID not being met.
Limited data
This poor allocation of resources can be attributed to the lack of accurate, real-time data about the condition that has occurred in the absence of a single nationally accepted long COVID case definition, as well as existing complications with chronic illness surveillance and primary care data sharing in Australia.
Subsequently, people with long COVID, and the challenges imposed by long COVID on consumers, are poorly recognised at a federal policy level.
Despite advancements in other OECD countries, such as the United States and United Kingdom, long COVID is not regarded as a disability in Australia, and a long COVID advisory group to facilitate consumer engagement with the Australian Government and policymakers does not exist.
No patient experience data has been formally collected from Australians with long COVID and there has been a lack of co-production with long COVID consumers in the design and delivery of care and support services.
This limited understanding and poor integration of consumers’ lived experiences into care pathways and policy compromises the delivery of person centred, community driven, value-based care.
Many of these issues have been identified as existing barriers within Australia’s healthcare system affecting people with chronic illnesses in general and the need for improvements in three key areas have been identified – identification, recognition, and consumer engagement.
The following recommendations are made.
Identification
Care-seeking guidance for people with ongoing COVID-19 symptoms and the risks associated with developing long COVID must be clearly conveyed in public health messaging to empower all Australians to make adequately informed health decisions.
This must be underpinned by improved identification and monitoring of long COVID cases in Australia.
Such advancements are necessary to enhance our understanding of long COVID’s epidemiology, as well as the healthcare, disability, and social service needs of Australians with the condition.
Specifically, surveillance must be broadened by developing a national long COVID registry, establishing a national minimum data set for chronic illnesses, and expanding electronic health data collection and sharing. Accessible and inclusive public health advice about long COVID, using a consensus case definition and consistent terminology, must also be co-produced.
Recognition
The challenges of living with long COVID, including discrimination and stigma, must be recognised and appropriately addressed in Australian health policy and service administrative processes.
Achieving this requires the formal recognition of the disabling nature of long COVID, including acknowledgement of the disabling nature of long COVID at a federal policy level and within the design and provision of care and support services.
In consultation with consumers, an approach to reducing stigma and discrimination against people with long COVID in Australia must also be developed.
Consumer engagement
To ensure that all policy and care pathway decisions are informed by the lived experiences of long COVID consumers, people with long COVID, their family and carers must appropriately and inclusively represented.
This will require understanding the care and support needs of Australians with long COVID by expanding research using appropriate patient reported experience and outcome measures at a national level.
An intersectional, consumer-driven advisory group for long COVID must also be established and regularly consulted by policymakers and GPs must be adequately resourced to co-produced care pathways that align with the care and support needs of long COVID consumers.
While advancements in these areas must be prioritised to promote and facilitate the best possible health and quality of life for all Australians with long COVID, it must also be acknowledged that mitigating the spread of COVID-19 is critical to managing the future burden of long COVID on both consumers and the healthcare system.
Prevention, together with an improved understanding of the risk factors for long COVID, are integral to reducing the future prevalence of long COVID in Australia.
From X/Twitter
Read the article: Not ‘little adults’: Experts say long COVID undercounted, misdiagnosed in kids
Link to article here.
See Croakey’s extensive archive of articles on long COVID.
