3. Research and data

Overview

3.1The evidence before the Committee almost universally called for improved research and data on long COVID.

3.2The Committee heard there has been significant research conducted into long COVID to date, despite considerable challenges facing researchers. These challenges include limited research funding, a lack of quality data and the lack of Australia-specific research centred on our unique experience with the dominance of the COVID-19 Omicron variant, and our high vaccination rates.

3.3While stakeholders specifically identified that substantial progress has been made in areas such as biomarker research, there remain considerable knowledge gaps with respect to other aspects of long COVID. The need for improved data collection on Australian patients with long COVID, and for research regarding treatments, emerged as common themes from the evidence received by the Committee.

3.4This chapter examines completed and ongoing research, suggested directions for future research, and how data collection, linkage and analysis could be improved. It is noted that although this chapter primarily discusses research and data separately, the two are heavily interconnected in practice.

Current and past research

3.5The submissions to this inquiry indicate that many Australian researchers have and are currently investigating a variety of aspects of long COVID, including prevention, symptoms, and treatments. The importance of fostering increased collaboration and Australia-specific research emerged as common themes.

3.6The Committee heard that since the start of the COVID-19 pandemic, ‘Science has moved quickly to build knowledge of COVID-19’.[1] A number of past and current research studies relate specifically to long COVID; there is an international repository of over 10000 studies on this topic.[2]

3.7Areas of research regarding long COVID that are currently being, or have been, addressed by Australian researchers include:

• Ventilation[3]
• Cardiac and respiratory health[4]
• Mental health and social issues[5]
• Cognitive and neurological issues[6]
• Treatment and diagnosis.[7]
  8. Multiple issues were raised in the evidence as impediments to generalising and relying upon past Australian long Covid research and for conducting new research, such as poor research quality, regulatory issues and limited funding. These points are discussed in more detail below.

Research quality

3.9The Western Health COVID Recovery Collaboration, a partnership between Western Health and Deakin University including consumers, clinician researchers and academics, suggested that the volume and speed of general COVID-19 research have resulted in quality, accuracy and waste problems:

The majority of published COVID-19 systematic reviews and clinical trials have been evaluated as low-quality, while ‘spin strategies’ that overstate findings have been identified within randomised control trials. Inefficiency and waste are also posing further barriers to research quality, along with diverse interventional controls.[8]

3.10The Burnet Institute noted that ‘although at least 26 randomised clinical trials of long-COVID therapies are under way, many are too small or lack the necessary control groups to give clear results.’[9]

3.11Queensland Health was critical of existing long COVID research, observing that it is ‘frequently low quality and not relevant to Queensland’s context of high vaccination rates and recent milder variants. As a result, these publications and reports risk inflating estimates of prevalence, health impacts, and community anxiety.’[10] Queensland Health also raised the reliance on retrospective studies as an issue, and advised that ‘There are relatively fewer prospective studies, with most reports drawing from retrospective analysis which introduces significant biases in the recall of experiences and events, and in the selection of controls.’[11]

3.12The Murdoch Children’s Research Institute identified some major limitations of studies on long COVID including:

• Small numbers of participants
• Non-standardised methods for identifying and classifying infection and persistent symptoms, including patient reported infection in non-controlled settings, and selection biases
• Variation in the definition of long COVID and inclusion of symptoms.[12]
  13. Additionally, the Murdoch Children’s Research Institute noted that most long COVID research has been undertaken in adults, and that more research focusing specifically on children and adolescents is needed.[13]
  14. Associate Professor Louis Irving, a Respiratory Physician at the Royal Melbourne Hospital’s Post-Covid Clinic, also emphasised the need to carefully interrogate research relating to long COVID. For example, when commenting on whether the percentage of people with severe COVID symptoms had reduced after widespread vaccination, Associate Professor Irving advised that ‘there is certainly some suggestion that that might be true, although my experience with all the COVID-related publications is that you need to see it a second and a third time before you believe it. There are a lot of early reports that turned out not to be true.’[14]

Regulatory issues

3.15The Committee received submissions that discussed aspects of Australia’s regulatory landscape that impeded their long COVID research efforts.

3.16UPcare Group, a botanical drug research and development enterprise, reported that that patent protection activity by large pharmaceutical companies limits related product developments by other researchers. UPcare Group explained:

Small companies that are unable to acquire the resources required to further their product development have only two options: gaining the interest of big pharma or reducing their efforts. This results in research tending to be unidirectional and not multidirectional.[15]

3.17Professor Andreas Suhrbier, a National Health and Medical Research Council[16] research fellow, told the Committee that his research group waited up to ten months to receive a response to a request to obtain import permits needed for their research.[17] Professor Suhrbier said:

Research into COVID and long COVID has been severely impeded by a series of slow and cumbersome regulatory issues. One of the main problems is obtaining import permits from DAFF [Department of Agriculture, Fisheries and Forestry] now takes well in excess of the prescribed 90 days, even for PC1[18] items like licensed vaccines.[19]

3.18Professor Suhrbier explained that these delays make it difficult to participate in collaborative research and development with international bodies.[20]

Funding

3.19Several submissions raised funding as a critical limiting factor to successful research outcomes.

3.20Dr Sharon Lewin informed the Committee that the current approach to funding research tends to increase fragmentation rather than encourage collaboration. She commented:

Lastly, most of the funding that we did with COVID—and there was quite a bit of additional research funding coming in for COVID—was done in the usual model, meaning breaking people up into small groups and competing with each other. We got a whole lot of small studies, and nothing cohesive. If I could just make the

argument for big challenges like this we need strategic funding that brings people together, not breaks them apart and allows small groups to compete against each other.[21]

3.21The National Clinical Evidence Taskforce (NCET), a collaboration of Australia’s medical colleges and peak health organisations who provide evidence-based treatment guidelines for urgent and emerging diseases, noted that the Victorian Post-Acute COVID-19 sequelae (VPACS) research group, which formed in February 2021 to share developments in long COVID research, has been operating without Australian Government funding.[22]

3.22Professor Mark Morgan, the Chair of the Royal Australian College of General Practitioners’ (RACGP) Expert Committee for Quality Care, criticised the decision not to renew the Australian Government’s funding for the NCET. According to Professor Morgan, the NCET is:

…the only organisation that has been set up and that is capable of doing this work in Australia…it maintains flow charts and evidence-based recommendations, with 100 per cent consensus of the 35 peak bodies involved in that organisation, including the RACGP. It is world’s best practice in evidence generation…[23]

3.23During the public hearing roundtable convened by the Australian Academy of Science and the Australian Academy of Health and Medical Sciences, the Committee heard from multiple witnesses that there is a gap in implementation of knowledge in Australia, with limited funding available to translate scientific findings into the coalface.[24]

3.24UPcare Group advised that in the private sphere, there have been ‘limited opportunities to raise development capital’ for COVID-19 treatment and pharmaceutical research.[25]

3.25Other submissions noted the relative lack of funding for long COVID research in Australia when compared with other jurisdictions. The Faculty of Medicine, Dentistry and Health Sciences of University of Melbourne (University of Melbourne) observed that:

Research funding for long COVID in Australia is currently severely underfunded compared to funding internationally, in particular the United Kingdom (UK) and the United States of America (USA). Overseas health authorities are spending billions on tackling long COVID, with innovative research projects for new treatments and comprehensive patient support.[26]

3.26However, the Department of Health and Aged Care (the Department) submitted that there has been an overall investment of A$130 million in COVID-19 research through the Medical Research Future Fund.[27] A portion of this has been allocated to long COVID research.[28]

3.27The long COVID research projects identified by the Department as being funded through the Medical Research Future Fund were:

• A$3.4 million to Murdoch University to further its research into improving the understanding of long-term impacts of COVID-19 and develop new models to predict disease progression and tailor treatment
• A$1.8 million to University of Melbourne to investigate the effect that SARS-CoV-2 variants of concern may have on the brain
• A$3 million to the Australian Institute of Health and Welfare (AIHW), to establish a national linked data platform that integrates COVID-19 case information with a range of relevant existing health datasets
• A$2.4 million to University of New South Wales to investigate statin treatment to prevent brain complications as a result of COVID-19
• A$2.6 million to University of Melbourne to investigate the use of cardioprotective therapy to manage persistent cardiovascular effects of COVID-19.[29]
  28. According to the Department, the National Health and Medical Research Council has also funded two projects on long COVID:
• A$717,305 to the University of Queensland to investigate COVID-19-induced vascular complications: mechanisms and potential therapies
• A$904,308 to the University of Queensland for the project ‘Targeting neuropilin in SARS-CoV-2 neuronal uptake and transport.’[30]
  29. The AIHW also provided funding to the Australian National University (ANU) Centre for Social Research and Methods’ COVID-19 Impact Monitoring series, which includes a focus on experiences of long COVID.[31]
  30. The Committee heard differing perspectives on where long COVID research funding should be directed. Associate Professor Anthony Byrne, a Respiratory Physician and lead investigator on the ADAPT observational cohort study led by St Vincent’s Public Hospital, called for more government funds to support hospital-based research[32], whereas the RACGP argued that:

There needs to be a renewed focus on supporting and funding research in general practice. General practice research must be a priority because it is the cornerstone of the health system that provides care to the majority of the population. Currently, less than 1% of National Health and Medical Research Council… competitive funding is awarded to primary health care projects, and less than 1% of funding in the Medical Research Future Fund… 10-year plan is specifically allocated to primary care.[33]

3.31Professor Brendan Crabb AC, the Director and Chief Executive at the Burnet Institute, recommended better coordination of the Medical Research Future Fund and the National Health and Medical Research Council long COVID projects. He stated:

The reason they're [the Medical Research Future Fund and the National Health and Medical Research Council funding streams] separate is that there's a really important function that needs to be at least conceptually maintained of the different funds. But lacking that overall coordination is a big missed opportunity here, as is potentially the NIHR [National Institute for Health and Care Research][34] type activity that the UK has that is missing …the MRFF [Medical Research Future Fund]—it has a very conservative disbursement strategy. It's a well over $20 billion fund now.’ It's a $650 million disbursement each year or something of that magnitude. The aim when it was launched was for it to be a billion dollars a year, and that is still less than 5 per cent of the fund... It has an incredibly conservative approach to disbursement. That was there for a reason at the time but it's no longer as relevant.[35]

3.32Other long COVID research funding sources were also identified in the submissions, including private and state government sources. These included:

• Philanthropic organisations such as the Spinnaker Health Research Foundation, the McCusker Charitable Foundation and the Telethon Trust[36]
• The National Heart Foundation of Australia[37]
• An ‘altruistic donation’[38]
• The Victorian Government Department of Jobs, Precincts, and Regions[39]
• The Lung Foundation Australia.[40]
  33. Evidence from Western Australia (WA) highlighted some critical state government funding being channelled into long COVID research. The WA Department of Health submitted that the WA Government’s Future Health Research and Innovation (FHRI) Fund:

…provides a secure source of funding to drive health and medical research, innovation and commercialisation and through these activities, improve the health and prosperity of all Western Australians. The FHRI Fund Strategy which provides a high-level vision and goals for research and innovation has been refreshed and now includes "Living with COVID-19 and Long-COVID" as a focus area, which will inform future calls for research and innovation proposals.[41]

Suggestions for future research

3.34The Australian Society for Medical Research advised that research needs to characterise the biological and clinical features of long COVID to ultimately inform researchers, health care professionals, patients, and caregivers, and policy makers and to strengthen the development of preventative health strategies, diagnostic tests and new treatments.[42] Specifically, future research needs to address key issues including:

• How is Long COVID diagnosed?
• Can we predict who will develop long COVID?
• What are the clinical symptoms of Long COVID in the Australian population?
• Are there distinct subtypes (phenotypes) of Long COVID?
• What is the natural history of Long COVID?
• How do the clinical manifestations of Long COVID vary across the lifespan and different demographic groups?
• How do symptoms change over time?
• How are symptoms affected by various interventions, such as vaccines?
• Are there distinct phenotypes among those patients who do not fully recover from initial COVID-19 infection?
• How does SARS-CoV-2 infection initiate development of conditions that evolve over time to cause organ dysfunction or increase the risk of developing other disorders?[43]
  35. A common theme that emerged from the evidence was the need for further research regarding long COVID diagnosis and treatment. According to Emerge Australia, a patient organisation for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), ‘The historic lack of research into post-infection diseases means that hundreds of thousands of Australians with Long COVID also have very few treatment options, and face years of chronic disability.’[44]
  36. Evidence to this inquiry also raised the need for Australia-specific research due to our comparatively high vaccination rates and the dominance of the Omicron variant. The Australian Academy of Health and Medical Sciences and the Australian Academy of Science advised that:

As Australia’s path through the COVID-19 pandemic was different from that of most other countries due to early lockdowns until vaccination rates were high, our experience of long COVID may be different. There is a strong case for progressing targeted research specifically within the Australian community.[45]

3.37The submissions indicate that the effect of different variants on the development of long COVID has yet to be determined, and the protective effect of vaccination needs to be further investigated.

Preventative strategies

3.38Several submissions suggested further research be undertaken into means of preventing long COVID.

3.39The Institute for Evidence-Based Healthcare submitted that COVID-19 vaccines have been found to prevent COVID infections, particularly in respect of earlier variants of the virus, and thus would help prevent long COVID. The Institute submitted that what is less clear but ‘highly plausible’ is whether vaccines reduce long COVID by virtue of reducing the severity of COVID-19 itself and therefore ‘trials on vaccination effect for post-infectious and post-long COVID patients should be conducted as a priority.’[46]

3.40Moderna Australia recommended continued investment in vaccination research, as ‘Retrospective and prospective surveillance of Long COVID and Repeated Infections in fully and partially vaccinated individuals is required to determine impact of vaccination on the incidence of Long COVID and Repeated Infections as well as the outcomes of these events.’[47]

3.41COVID-19 vaccines and long COVID, alongside other preventative strategies, are discussed further in Chapter 5.

3.42From a research perspective, Professor Lidia Morawska from the School of Earth and Atmospheric Sciences, Queensland University of Technology, confirmed that there is a need for further study regarding pollutant measurement:

There are health-based World Health Organization Air Quality Guidelines (WHO AQG) that apply to both outdoor and indoor air. However, since we cannot routinely measure the pollutants included in the guidelines in every shared indoor environment, we need to identify a set of pollutants that can be measured.

Pollutants originating from human expiration indoors, including pathogens, lead to airborne infection transmission. They are not included in the WHO AQG and it is not feasible to routinely measure pathogens in these environments. Therefore, we need to identify proxy parameters for such pollutants that can be measured.

3.43Professor Robyn Schofield, an Associate Professor of Atmospheric Chemistry at the University of Melbourne, suggested that there is a need for further research into ventilation technologies:

We need research to ensure that we can deal with the fact that we can drive down the cost. We want to have energy efficient buildings. We want to make them resilient to climate change. Outside air, bringing that in all the time, will not always work when we have bushfires or outdoor pollution, for example. We do need to have innovation in this space. We do need to ensure that any technologies that we bring in to solve the problem don't create a new one.[48]

3.44Improved air quality and ventilation controls to prevent COVID-19 infection and thus long COVID was discussed in several submissions, and this is discussed further in Chapter 5 of this report.

Diagnosis and causes of long COVID symptoms

3.45Evidence to the inquiry indicates that research into the pathophysiology of long COVID is needed to diagnose and understand the condition, and develop appropriate treatments.

3.46Associate Professor Anthony Byrne submitted that the ‘research and clinical as well as immunological insights from this study have been influencing the research space and [they will] continue to make discoveries into key biomarkers[49] that correlate with LONG COVID.’[50]

3.47Although the evidence to the inquiry indicates that considerable progress has been made towards identifying long COVID-19 related biomarkers, some ongoing challenges to research in this area were reported.

3.48Professor Jeremy Nicholson, Director of the Australian National Phenome Centre, advised that ‘a whole series of really very interesting and potentially very important markers of the disease and long COVID’ have been developed. ProfessorNicholson further stated that COVID-19 is ‘a genetically unstable disease—it probably will never stabilise—so it's going to keep throwing new things at us for years to come. So we need to continue the basic research.’[51]

3.49Professor Nicholson further reported that he had difficulty testing disease markers in Australian populations due to lack of different COVID-19 variants in the populations, and noted that Australia lacks an equivalent body to the NIHR, which has funded translational research and driven scientific progress in the UK.[52]

3.50The Western Health COVID Recovery Collaboration advised that the diverse range of long COVID symptoms ‘is a key challenge to rigorous research’ and cautioned that as a result, ‘Controls may not address the varying trajectories of Long COVID, as symptoms may emerge at different stages of recovery.’[53]

3.51The Australasian College of Nutritional and Environmental Medicine called for additional research into multiple areas that it suggests may contribute to the long COVID experience: autoimmunity and autoimmune exacerbation, persistent co-infection/inflammation with Epstein Barr Virus, mould, allergy, vector borne illness, and Mitochondrial function and metabolic syndrome.[54]

Links to other conditions

3.52The Committee also received important evidence from health charities, not-for-profit organisations, and medical research institutes about the relationship between long COVID and the potential onset of other medical conditions. The evidence suggested that long COVID could be associated with an increased risk of developing other conditions, but more research is needed on this issue.

3.53Associate Professor Shidan Tosif, a Consultant in General Medicine and Clinical Lead at Melbourne’s Royal Children’s Hospital’s Post-COVID Clinic, shared his experience supporting children with long COVID. He stated that the clinic has not seen ‘that long COVID leads to new immune problems or new medical conditions’, however noted that it is an area currently under research and something the clinic is monitoring for, by trying to conduct long-term follow-up with its patients.[55]

3.54The Victorian Department of Health noted that ‘Studies also suggest that long COVID may be associated with more serious issues such as an increased risk of developing diabetes, cardiac issues such as heart attacks and strokes, and neuropsychiatric symptoms such as insomnia.’[56]

3.55Diabetes Australia told the Committee that ‘Research funding should be made available to further investigate; COVID related new onset diabetes, diabetes related COVID risks, prevention of complications and long COVID and the role of antiviral therapy in prevention of long COVID.’[57]

3.56The Stroke Foundation also advised that evidence suggests those who experience long COVID have an increased risk of suffering from a stroke, and noted that some neurological symptoms, such as fatigue, are common to both conditions. It indicated that long COVID research could have benefits for other conditions and ‘as more is invested in research to improve our understanding of Long COVID, this should accelerate the development of therapeutic interventions for a range of conditions, including fatigue.’[58]

3.57The Florey Institute of Neuroscience & Mental Health has been investigating the long-term neurological consequences of COVID-19 and reported that their research suggests:

there are serious long-term consequences of infection in multiple organ systems, such as post-acute COVID-19 syndrome, or ‘long COVID’. There is particular concern around the neurological symptoms including loss of smell and memory complaints. Approximately 80% of those infected with SARS-CoV-2 virus

report neurological dysfunction and 30% have persistent symptoms. The long-term implications of these neurological symptoms require careful consideration as many of them are known to be associated with increased risk of neurodegeneration or recognised as part of the prodrome of these disorders.[59]

3.58The Committee also received evidence indicating a potential link between long COVID and autonomic dysfunction, specifically postural orthostatic tachycardia syndrome (POTS). The Australian POTS Foundation and the Australian Dysautonomia and Arrhythmia Research Collaborative from the University of Adelaide explained that POTS is ‘an autonomic disorder identified by its hallmark manifestation of postural induced rapid heart rate in the absence of blood pressure drop on standing’, and is ‘poorly understood by healthcare providers’. These groups drew the Committee’s attention to research which indicates that there is a high prevalence of POTS in people with long COVID.[60]

3.59The Baker Heart and Diabetes Institute also informed the Committee about research it is currently conducting into the impact of long COVID on cardiometabolic health. In describing results from one study, the Baker Heart and Diabetes Institute noted that:

Although the main group of participants in this study had symptoms consistent with “Long COVID”, significant subjective functional impairment was documented in a minority. Very significant reductions of exercise capacity can be identified among these symptomatic patients, although this is uncommon… Echocardiographic evidence of abnormal cardiac structure and function is uncommon in patients after COVID, and it seems unlikely that there is a cardiac cause for impaired exercise capacity.[61]

3.60The National Heart Foundation of Australia suggested that to help improve understanding of long COVID and other cardiovascular (e.g., heart failure), brain and nervous system conditions (e.g., stroke or dementia) caused by COVID-19 infection, ‘further investment should be made into dedicated COVID-19 research studies…potentially linked to the existing ‘45 and Up Study’, the largest ongoing longitudinal study of health and ageing in Australia. This would likely be a good investment over the next 5-10 years.’[62]

Treatments

3.61The evidence suggests that a successful single, or even multidisciplinary cure for long COVID remains elusive. In the face of this, people with long COVID have had to turn to symptom management and treatment strategies, but the success of these remain hard to quantify.

3.62The Burnet Institute advised that there have to date been no published clinical trials evaluating long COVID management strategies, and suggested that studies looking at antiviral treatments of long COVID are needed:

Some of the most logical candidate drugs for long COVID are still not being tested in trials. Several antivirals are used against acute COVID-19. Some researchers think these drugs could ease the symptoms of long COVID, too — particularly as evidence grows that a lingering SARS-CoV-2 reservoir could trigger the condition. But there are still no registered studies directly looking at whether these antivirals — which are expensive and in relatively short supply compared with generic drugs — could ease long-COVID symptoms.[63]

3.63Professor Crabb AC expanded on the need to fund clinical trials, emphasising the need for research to investigate a variety of treatments:

Well-done trials are still necessary…A really effective pharmacological intervention is likely to be more than just antivirals, in the end. How long does it need to be taken for? Are there any biomarker issues? For example, if you have low cortisol, does it work? What about if you don't have low cortisol? These are the sorts of things that are going to be looked at.[64]

3.64In its submission, the Australasian Society of Clinical and Experimental Pharmacologist and Toxicologists recommended ‘a national policy to support drug trials into long COVID that are in alignment with core clinical pharmacology and physiology principles, to ensure safety and efficacy of proposed treatments.’[65]

3.65Associate Professor Nada Hamad, the Director of the Haematology Clinical Trials Unit at St Vincent’s Hospital, expressed the view that research is needed into co-designing models of care with long COVID patients. She wrote that ‘Even in the absence of known treatments, it is clear that the model of care that we are accustomed to in clinical medicine, even in multidisciplinary teams, is not effective.’[66]

3.66Professor Julie Leask, a social scientist, and Penelope McMillan, the spokesperson for ME/CFS Australia, also raised the need for patient experience to inform research into treatments for long COVID.

3.67Professor Leask stated:

I want to make the case for a systematised look at the lived experience with long COVID that is a research based one that involves talking to people purposefully selected— people across many different strata, not just people who are accessing care but those who can't, such as people in rural and regional areas. That would be very useful from both a qualitative and quantitative perspective in getting a richer understanding of the many ways in which long COVID is affecting different people, including those with a voice and those with less of a voice…[67]

3.68The Australia Long Covid Community Facebook Group also reiterated that people with long COVID should be part of designing policy and research, given their significant lived experience of the condition. Its submission emphasised: ‘Work with us to design policy and research… Don’t make decisions without us.’[68]

3.69The National Aboriginal Community Controlled Health Organisation similarly told the Committee that any research among Aboriginal and Torres Strait Islander people be led by Aboriginal and Torres Strait Islander researchers and prioritise sharing of information with the community.[69]

3.70Penelope McMillan commented that:

The urgency with which we need to invest in research for those treatments is huge…There's a 300-person study that made progress in addressing fibrin amyloid microclots that dramatically improved people's functionality for a very large portion of the cohort using a triple drug protocol—drugs that are readily available, one of which is aspirin. Australian patients are attempting to replicate these results at home using over-the-counter drugs and nutritional supplements that they import from the United States. We need replication so that people don't have to self-medicate, self-treat with things that have been shown to be very likely to be effective.[70]

Poorly studied groups

Children and adolescents

3.71The evidence to the inquiry raised the issue of insufficient research into the potential impact of COVID-19 infections and long COVID in children and adolescents.

3.72One reason this demographic may warrant greater attention in research is that these individuals will likely be affected by the virus over the longest period, given their age.

3.73The Committee also heard that a greater research focus on children and adolescents may also be justified since this group potentially faces higher rates of COVID-19 reinfection.[71]

3.74Children and adolescents may be at greater risk of repeated COVID-19 infections due to factors including: their extended time spent in high density settings such as schools, an increased likelihood of being asymptomatic, and this group’s lower vaccination rates compared to the adult population (see Chapter 5 for further discussion).[72] The potential for higher COVID-19 reinfection rates is relevant to long COVID since as previously discussed, repeated infections appear to increase the risk of long COVID.[73]

3.75The NCET advised that while long COVID research discussions tend to focus on the adult population, the impact on the paediatric population is also worthy of focus:

It would be prudent to monitor emerging evidence around the potential impacts of long COVID on the paediatric population, who may have to live with outcomes for a longer period of time, with potential ramifications for their health, quality of life, along with associated impacts on the healthcare system and social and economic flow-on effects.[74]

3.76The Murdoch Children’s Research Institute called for research into areas relevant to long COVID in children, including:

• The true risk of persistent symptoms caused by COVID infection/s in children and adolescents from well-designed studies and better data.
• The immune differences of children and adolescents who experience persistent symptoms due to long or repeat COVID infections.
• The impact of age, disease severity and duration, virus strain, and other factors on the risk of long COVID in children and adolescents.[75]
  77. The University of Melbourne advised that understanding long COVID in children in particular is important as ‘Symptoms in children are different to those in adults but are poorly recognised. In addition to acute impacts on health, there are also likely consequences of long COVID on social and cognitive development that affect learning with subsequent longer-term impacts.’[76]
  78. The Royal Australasian College of Physicians raised that ‘there are currently no Long COVID cohort studies in Australia focusing on children and adolescents. Vaccination rates of children in the 5-12 year age group continue to be low, and the 6 months to under 5 years age group remaining primarily unvaccinated because vaccination is limited to children at greater risk of severe disease.’[77]

Older Australians

3.79In addition to children, evidence to the inquiry raised that it is important to investigate the effect of long COVID on older Australians (those aged 65 years and over).[78]

3.80The University of Melbourne suggested that ‘Understanding long COVID in older age groups…is a priority as there is a risk that in this age group, symptoms of long COVID (fatigue, brain fog, etc) may not be diagnosed and simply attributed to the effects of ageing or age-related disorders...’[79]

3.81In his evidence, Professor Michael Kidd AM, Deputy Chief Medical Officer, discussed the lack of research into the effect of long COVID on older people, and even the possibility of misdiagnosis or underdiagnosis of long COVID, leading to poorer health outcomes for that cohort of people. He told the Committee:

I did want to reinforce that long COVID in the elderly is one area that we are not looking at or hearing anything about. We looked at the international literature. We had a publication in The Lancet Healthy Longevity at the end of the year. There is very little coming through. One of the worries we have with the elderly, particularly people in aged care, where there have been so many people with COVID-19, is that people may have long COVID which gets misdiagnosed as frailty, and they miss out on the benefits of potential multidisciplinary care which may help them to recover and regain some of the function they may otherwise lose, causing a further deterioration in their health.[80]

People with disability

3.82Around 18 per cent of Australia’s population, or 4.4 million Australians, live with a disability.[81] The AIHW states that many Australians living with a disability are at increased risk of contracting COVID-19 and ‘experiencing more severe health impacts.’[82] The true impact of this community’s experience of long COVID is still unfolding.

3.83The submission from Advocacy for Inclusion – Incorporating People with Disabilities ACT, a body representing people with disabilities in the ACT, advised:

Little is known about the increased risk of contracting Long COVID if you are [sic] already have a disability. This is complicated by the failure to identify symptoms or recognise how symptoms present, for example, among people with intellectual disability. Disability support systems are driven by definitions and checklists that allow nonmedical workforces to assess and approve candidates for support services. But those with “invisible illness” rarely meet such criteria.[83]

3.84Advocacy for Inclusion recommended ‘a research agenda deciphering the multidimensional nature of Long COVID and its connection with pre-existing conditions, its identification, management, and treatment among people with disability, as well as its long-term social and political implications.’[84]

Social effects research

3.85Although everyone is largely aware of the effects of the COVID-19 pandemic on society generally, less is known about the current and future effects of long COVID, from the individual lived experience through to more wide-ranging societal effects.

3.86Relationships Australia reported that their practitioners observed from early in the pandemic that people began to present with an increased range of co-morbidities, and an increased intensity of those co-morbidities. Their practitioners also noted the ‘first onset of domestic and family violence, and increases in harmful gambling, alcohol and other drugs.[85]

3.87Relationships Australia suggested that to reduce the social effects of long COVID, the government should support research, education and public awareness campaigns to foster and maintain social connection, especially for people living with disability (including long COVID) and reduce risk of stigma and discrimination in health care, employment, education, cultural, social and recreational activities.[86]

3.88La Trobe University advised that their researchers are investigating media coverage of long COVID, and ‘plan to work with patients to understand how well the media is providing their information needs and, through their involvement, to develop best practice guidelines for reporting on Long COVID.’[87]

Impact on key workers

3.89Several submissions also raised concerns regarding the effect of long COVID on health and research workforces.

3.90The Victorian Department of Health noted that absences, sick leave and lost capacity due to long COVID could place pressure on many industries, and called for ‘Greater investment in research, including studies on long COVID systemic health impacts, including workforce and how these impact capacity and demand for hospital services.’[88]

3.91Exercise & Sports Science Australia advised that ‘Little research evidence is available yet as to the experiences of healthcare service providers in supporting long COVID-19 patients. Anecdotal evidence from Exercise and Sports Science Australia’s members suggests that allied health professionals need upskilling (education and training) to better support patients.’[89]

3.92The Western Health COVID Recovery Collaboration also advised that research is needed into the experiences of the allied health, aged care or auxiliary workforces, and noted that the pandemic experiences of this workforce may be different to their medical and nursing colleagues. According to the Western Health COVID Recovery Collaboration, ‘Without urgent action, there may be very few people left to provide care for Australians into the future.’[90]

3.93The Australian Council of Deans of Health Sciences recommended that health workforce research be included in a national framework for research into long COVID. It noted:

Evidence to the Inquiry has already identified that Australia’s healthcare workers appear to be particularly at risk of long-COVID. There will also be continuing and growing demand on the health system for access to rehabilitation in community settings for patients with long-COVID.[91]

3.94The Committee also received evidence regarding other key workers that may be particularly impacted by long COVID, such as teachers. COVID Safe Schools Inc. noted that the demographics of the teaching profession align broadly with certain risk factors for long COVID (middle aged females), and in combination with schools being high transmission environments, this puts teachers at risk of developing long COVID.[92] The Australian Education Union supported this view, reporting that it has received reports of teachers developing long COVID.[93]

Economic impacts

3.95In their submission to the inquiry, the National Centre for Neuroimmunology and Emerging Diseases (NCNED) noted that no investigations have been conducted into the economic effects of long COVID in Australia, but suggested that the current economic burden of ME/CFS could serve as an example as it is an illness of similar pathology.[94]

3.96The NCNED suggested research should aim to:

• Determine the short, medium and long-term socio-economic costs of Long COVID, and what are the costs to patients specifically
• Determine the impact of Long COVID on economic burden, including costs incurred due to lack of productivity and loss of work for both health consumers and their carers, access to disability support services, increased visitation to healthcare practitioners, and cost of illness management
• The impact of Long COVID on low socio-economic status communities and those disadvantaged throughout the COVID-19 pandemic in Australia
• Consider a report on child and adolescent impact of Long COVID on the Australian economy, including health disparities
• Consider the impact of Long COVID on the Australian workforce.[95]

Mental health

3.97The detrimental impact on the mental health and wellbeing of those living with long COVID was a common thread throughout the evidence. The evidence indicates that more research is needed into the mental health and cognitive impacts of long COVID.

3.98The Australian Psychological Society and Phoenix Australia Centre for Posttraumatic Mental Health Ltd advised:

International research is currently underway to attempt to understand the neurological underpinnings of long COVID. It is important to note, however, that despite the dedicated efforts from leading researchers, the evidence is still very much in its infancy…In particular, there is a critical need for more research about treatments for psychological and cognitive symptoms associated with long COVID.[96]

3.99MSD Australia, a subsidiary of Merck & Co., noted that international studies highlighted the psychiatric consequences of long COVID, including post-traumatic stress disorder, anxiety and depression and confirmed the need for further research into long COVID treatments:

The substantial impact of long COVID on patients’ mental and physical health was also demonstrated in a cross-sectional study of 1,930 healthcare workers, of which 1,406 suffered from long COVID...Significant differences were reported in physical and mental health scores in those with long COVID versus those without prolonged symptoms…The authors noted these findings highlight the need for effective rehabilitation strategies to improve HRQoL [Health-Related Quality of Life]. In addition, the need for further research to identify treatments that can prevent the development, and subsequent burden, of long COVID was highlighted in a cross-sectional study in Japan. This study demonstrated substantial reductions in HRQoL…in 108 patients experiencing a prolonged symptoms following acute COVID-19…[97]

3.100The Australian Academy of Health and Medical Sciences and the Australian Academy of Science reported that knowledge gaps regarding long COVID include:

potential mental health and neurological impacts of long COVID– these are relevant to all people with long COVID, but researchers believe that children and adolescents may be more susceptible – even among those with no history of mental illness or developmental delay. We need to ensure their experiences are understood, physical symptoms addressed, and if they have lost a level of daily function, the psychological impacts are adequately acknowledged and managed.[98]

Data

3.101Researchers, health agencies and treating practitioners emphasised in their evidence to the inquiry that quality Australian data is needed to understand the prevalence, disease course and social effects of long COVID.

3.102Issues were raised with the current state of data collection, data availability, data quality, and a general lack of existing Australian data. Several submitters made suggestions as to how this could be improved using tools such as new clinical codes and Medicare Benefits Scheme (MBS) items, overseas models and new technology.

Existing data sets, databases and modelling

3.103The Committee heard about several models and data sets that have already been developed by researchers and government agencies.

3.104The AIHW developed a data set that will link COVID-19 cases collected in state and territory notification systems to existing health data sets, including deaths, hospitals, aged care, immunisation, MBS and PBS data. Current limitations of the data are that there is no detailed information included on an individual’s education or level of income, the scope of the linked data is limited to administrative health data sets, and if an individual does not have their positive result registered with a state or territory health department, the individual will not be flagged as having COVID-19 in this dataset.[99]

3.105The Department uses the Multiple Analysis Data Integration Project data from the Australian Bureau of Statistics (ABS) for the ‘Understanding socio-demographic cohorts in the COVID-19 Vaccines Strategy’ project. The project ‘uses deidentified data in the Multiple Analysis Data Integration Project linked to the Australian Immunisation Register dataset to…analyse selected socio-demographic cohorts in the administration COVID-19 vaccines, and allow policy interventions to be targeted accordingly.’[100]

3.106Professor Raina MacIntyre, head of the Biosecurity Program at the Kirby Institute, advised the Committee that models of long-COVID projections can be used to test the impact of infection prevention and control strategies on future burden of long-COVID. Professor MacIntyre reported that using a mathematical model, she and her fellow researchers were able to estimate the age-specific burden of long COVID in Australia to October 2023:

The model estimated that with a vaccine-only policy and no other efforts to mitigate transmission, almost all Australians will be infected at least once in the time window from January 2021 to August 2023. The total people with long-COVID by December 2023 is 1,323,482, with 43,910 of these being children 0.4 [sic] [0-4] years of age.[101]

3.107Mama Health, an international collaboration of people with backgrounds in economics, information technology and medicine, told the Committee that it is ‘engaging with online patient groups and associations, and providing them with an online platform to tell their entire patient story…Their stories are then aggregated to form a community dashboard, visually displaying anonymous data from others just like them. This dashboard is also available for clinicians and other healthcare players…’[102]

3.108Mama Health also advised that it has built a data mining and analysis model to generate data for long COVID research:

Using process mining technology, we organise all individual experiences in a model that mines, in an aggregated way, the most beaten paths of individuals, the roadblocks along their journey and the challenges people face - as reported by them. Such technology also allows us to assess correlations and dependencies among several events (e.g. symptoms and hospitalisation) to identify risk factors impacting patient outcomes.[103]

3.109The Australian Health Services Research Institute reported that the Australasian Rehabilitation Outcomes Centre holds a national database with more than two million rehabilitation episodes of care provided in both the public and private sectors across Australia. According to the Australian Health Services Research Institute, the Australasian Rehabilitation Outcomes Centre has enabled:

the modification of current data sets to facilitate the collection of rehabilitation episodes where the reason for the rehabilitation is post COVID sequelae… [andis] uniquely positioned to play a key role in the collection, analysis and benchmarking of long COVID data in returning people to work, normal functioning and family life.[104]

Issues with current data

3.110Although there is some data currently available, evidence to the Committee raised issues with its quality and illustrated the need for more comprehensive and reliable national data regarding long COVID.

3.111Dr Golo Ahlenstiel of the Western Sydney Local Health District discussed the district’s COVID-19 data collection platform in his evidence to the Committee. DrAhlenstiel advised:

We started data collection pretty much straightaway, and we have our ethics protocol and so on to make sure what we're doing is all appropriate. But I'm really concerned that a lot of our long COVID data comes from either hospital cohorts or cohorts referred to a long COVID clinic. So ultimately both cohorts have a substantial selection bias, either the most severe cohort or the one that has access to someone that refers them to a clinic.[105]

3.112The NCET’s submission to the inquiry repeated these concerns about the limited settings in which existing long COVID data has been gathered. It advised:

Existing long COVID clinics have been able to generate crucial data about the prevalence of long COVID secondary care, including data about likely prognosis for people receiving clinical treatment for long COVID in secondary care, however, this data cannot be extrapolated outside this setting. At the same time there is no comparable data source describing the prevalence of long COVID seen in primary care. [emphasis added] Without this information it is impossible to understand the true experience or impact of long COVID in Australia.[106]

3.113Professor Paul Kelly, the Australian Government’s Chief Medical Officer, emphasised the need for integrated data from across all states and territories, advising that ‘the biggest issue we have in infectious diseases is that we do not have notifiable, identifiable disease data at the national level. There are legal impediments to that. There is a long-standing issue. We have been talking to the states again and they are much more interested in doing that.’[107]

3.114Dr Nick Dregenberg, an academic, was critical of the lack of publicly available data to help members of the public and workplaces manage the risk of infection:

…the public is asked to individually manage their risk of infection, but the data they might use to do that, such as testing/case data linked to location, is being removed from public dashboards, and testing and reporting is optional. You can’t manage a risk you can’t see. And in workplaces staff are not told of other infected colleagues… [108]

3.115Allied Health Professions Australia pointed out allied health practitioners’ lack of access to digital health tools that would assist them with caring for long COVID patients, such as My Health Record and secure messaging. It advised that ‘Improving allied health digital infrastructure and its integration into primary health care will improve efficiencies for multidisciplinary care of long COVID but also many other chronic conditions.’[109]

Limited data for groups potentially particularly vulnerable to long COVID

3.116The Committee heard that as with the Australian population more generally, there is also a need for more data relating to community groups who are more susceptible to the effects of long COVID.

3.117Moderna advised that there is a need for data on long COVID and the impact of vaccination in the Australian context, and particularly from Aboriginal and Torres Strait Islander people and culturally and linguistically diverse communities where vaccination rates are often lower.[110] According to Moderna, ‘This is particularly important given the complexity of Long COVID symptoms, overlaid with different healthcare structures, as well as social policies (lockdown, mandatory masks, workplace vaccination etc.).’[111]

3.118The National Aboriginal Community Controlled Health Organisation advised that generally data relating to Aboriginal and Torres Strait Islander people and COVID-19 is poor, particularly as the ABS currently does not publish excess mortality data for Aboriginal and Torres Strait Islander peoples.[112]

3.119Kristy Crooks, an indigenous PhD scholar, also advised that there are issues with the collection of data regarding First Nations People:

It's important that the Indigenous status question is being asked of every patient, every visit, every time and that it's available on all pathology forms so we can accurately collect data on First Nations people. We know it's not routinely collected and it varies across jurisdictions. Also, the measures used to gather data for long COVID will systematically exclude First Nations people. For many First Nations people and families, illness is often normalised and they might not recognise that have long COVID and therefore won't seek healthcare. So, lots of First Nations people won't be diagnosed.[113]

3.120In relation to children and adolescents, the Murdoch Children’s Research Institute noted that ‘there is no Australian data on the health, social, educational, and economic impact of long COVID in children and adolescents.’[114]

3.121The Australian and New Zealand Paediatric Infectious Diseases Group also noted that ‘current evidence on the burden of post-COVID conditions, including long COVID, in Australian children is lacking.’[115]It advised there is a need for ‘high quality, local data on the burden of post-COVID disease in children that is integrated into the health system response. This will also be key to forming a sustainable plan to manage COVID-19 into the future.’[116]

3.122National Disability Services submitted that data regarding the effect of long COVID among people living with disability is not readily available, as 7.6 per cent of people under 65 with disability do not see a general practitioner when needed due to cost and people with severe or profound disabilities are also more likely to see multiple practitioners. It observed that ‘Data regarding any case management or collaboration across these groups is not readily available to investigate whether key health risks and needs are being identified and responded to.’[117]

Suggestions regarding data collection and analysis

3.123Several researchers, organisations and government departments offered advice as to how data collection and reporting could be improved to inform research and policy development regarding long COVID. The evidence to the Committee suggested that Australia could benefit from adopting some practices from other jurisdictions, particularly the UK.

3.124The Victorian Department of Health advised that what is needed is a ‘nationally coordinated approach to data and reporting particularly facilitating alignment of metrics and reporting to underpin best practice, continuous improvement to models of care and update clinical guidelines in line with emerging evidence.’[118]

3.125Further, it suggested a coordinated approach, like that adopted by the UK’s National Health Service, involving:

• Utilisation of administrative/coding data
• A defined approach to developing the new data required for service planning and decision making (for example: survey/future registries)
• Patient reported outcome measures
• Data on workforce impacts of long COVID, including productivity impacts,
• especially for the healthcare worker segment of the workforce
• Clinical toolkits including patient assessment tools (for example: COVID-19 Yorkshire Rehabilitation Scale[119])
• A nationally consistent approach to linking and using relevant data sets for research, planning and monitoring.[120]
  126. The NCNED referred to technology developed in the USA to help manage long COVID-19. It advised:

Machine learning techniques can be used to analyse high throughput data to provide insights into the impact of Long COVID on health and economy, promoting output of high impact research. Currently, a NIH funded clinical database is using machine learning models to explore de-identified electronic health record data to diagnose Long COVID and identify potential risks.[121]

3.127The National Notifiable Diseases Surveillance System (NNDSS) ‘coordinates data on over 70 diseases that present a risk to public health in Australia. This helps us identify trends in diseases, assess the impact of disease control programs and develop policies to reduce the impact of these diseases.’[122] The NNDSS collates, analyses and publishes disease information via a data visualisation tool, fortnightly reports, annual reports in the Communicable Diseases Intelligence journal and has published datasets for selected diseases from 2009 to 2019.[123]

3.128The Australian Nursing and Midwifery Federation recommended that the Australian Government include long COVID in the NNDSS’ Notifiable Diseases List and that guidelines should then be endorsed by the Australian Health Protection Principal Committee to include mandatory public reporting.[124]

3.129The NCET expressed concern about the potential overburdening of health professionals with data analysis:

ClinicalTrials.Gov lists 190 studies underway focused on long COVID and in the past 12 months there were more than 4000 studies on long COVID published. It is not possible for a clinician to evaluate this quantity of data alone.[125]

3.130Further, the NCET recommended that the government continue to fund it to ‘identify, assess, and synthesise up-to-date evidence and convene clinical expertise to develop and sustain recommendations for the clinical care of long COVID in adult and paediatric populations in Australia.’[126]

3.131Guidelines regarding long COVID for healthcare workers are discussed further in Chapter 6.

3.132Pathology testing data was put forward by Pathology Technology Australia as a potential source of long COVID related data. It noted that there is currently no single blood test that can help diagnose long COVID, but some candidate tests (such as Gamma Fibrinogen) correlate with clinical symptoms, and thus could be a useful source of data.[127]

3.133Professor Martin Hensher cautioned against neglecting traditional data collection techniques, such as population prevalence surveys:

It is possible that a desire to use advanced data linkage assets and techniques may have led to decisions not to use more traditional survey techniques. Unfortunately, data linkage results do not appear to be available yet, and – in any case – may not be capable of yielding the information actually required to plan for Long COVID policy responses.[128]

3.134Professor Hensher recommended that the Australian Government direct and provide funding for the ABS and the AIHW to jointly ‘establish a nationwide, monthly population survey of Long COVID prevalence’ across all age groups.[129]

3.135The University of Melbourne suggested that there needs to be ‘establishment of large data sets of patients with long COVID to enable data linkage’ to enable further long COVID research to occur.

3.136Further evidence indicates that long COVID datasets could usefully include the following information relevant to long COVID:

• Patient-level data on COVID-19 and subsequent health and healthcare utilisation history[130]
• A registry of patients with long COVID, established with a unique cohort that includes a significant number of cases of post infection illness of a minimum of six months duration who are followed intensively[131]
• Data from a self-reporting portal specific for:

• citizens to anonymously log their experiences of long Covid rates, onset and duration timings, and the mental and physical symptoms/impact citizens experienced and
• practitioners to log their experiences and incidences.[132]
  137. Associate Professor Anthony Byrne suggested that St Vincent’s Hospital could be the custodian of a national long COVID registry, which could collate into a single database the tertiary referral data of Long COVID clinics nationally, adding that:

This would help greatly with data capture, number of patients reviewed, economics, effectiveness, recruitment for national and international clinical trials and of course research from interested parties following appropriate ethics approvals.[133]

3.138Suicide Prevention Australia advised that to identify vulnerable and high-risk groups and create better health outcomes for these groups, the Australian Government should collect data on long COVID cases and repeat infection in the community. It recommended the government ‘work with State and Territory Governments, Coroners and the National Coronial Information Service to identify and report on any future suicide deaths where long COVID-19 may have been a contributing factor.’[134]

3.139The National Aboriginal Community Controlled Health Organisation recommends publication by the ABS of excess mortality data for Aboriginal and Torres Strait Islander people and that all research and data collection be consistent with the principles of Indigenous Data Sovereignty and aligned with Priority Reform 4 of the National Agreement on Closing the Gap.[135]

3.140Professor Margaret Hellard, the Deputy Director of the Burnet Institute advised the committee that community engagement is essential when it comes to data collection from Indigenous and Torres Strait Islander communities. She emphasised that these communities themselves need to articulate the questions that need to be asked - ‘there needs to be a codesigned community component where it's done seriously...’ Professor Hellard also noted that co-design data collection is more costly, and needs to be appropriately funded especially for underrepresented groups.[136]

Classification and coding systems

3.141The International Classification of Diseases (ICD) system was developed by the World Health Organization (WHO) and is used in the Australian health care sector to provide an internationally consistent method of classifying all types of patients, their treatment and associated costs. Classification involves the use of coding systems to translate clinical information into useful data sets, which can then be used for developing policies on funding, budgeting and setting costs.

3.142The WHO states that the ICD is important because it provides a ‘common language’ for recording, reporting and monitoring diseases. This language then allows physicians, nurses, other providers, researchers, health information managers and coders, health information technology workers, policymakers, insurers and patient organisations around the world to ‘compare and share data in a consistent and standard way – between hospitals, regions and countries and over periods of time. It facilitates the collection and storage of data for analysis and evidence-based decision-making.’[137]

3.143Specifically, the ICD-10-AM/ACHI/ACS classification system is used for classifying the care of patients admitted to public and private hospitals and consists of:

• International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Australian Modification (ICD-10-AM) – used to classify diseases, injuries and related health problems
• Australian Classification of Health Interventions (ACHI) – used to classify surgeries, therapies and health interventions
• Australian Coding Standards (ACS) – guidelines designed for nationally consistent application of ICD-10-AM and ACHI.[138]
  144. The Department advised that two additional codes relating to COVID-19 have been added to the Australian Modification of the ICD-10, being ‘History of COVID19 with residual conditions’ and ‘Post coronavirus disease 2019 [COVID-19] condition’.[139]
  145. Evidence to the inquiry raised the question of whether this classification system is adequate for the purpose of generating accurate long COVID data.
  146. The ABS uses the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10-AM) to code mortality data from state and territory registers of births, deaths and marriages. Once coded, the ABS uses this data to compile excess mortality statistics. According to the ABS:

Excess mortality measures can account for deaths due to COVID-19, potentially misclassified or undiagnosed COVID-19 deaths, and other mortality that may be indirectly related to the pandemic (e.g. relating to social isolation or changed access to health care).[140]

3.147However, the ABS noted that mortality data has limitations as only deaths certified by a doctor are included in the analysis and advised that data from small jurisdictions should be ‘interpreted with caution.’[141]

3.148In its submission, OzSage reported that ‘The excess death rate noted by actuaries is largely due to COVID-19 and its post-acute complications, including cardiovascular disease’[142], referring to the ‘How COVID-19 has affected Mortality and Morbidity in 2020 & 2021’ report by the Actuaries Institute. By analysing the ABS’ provisional mortality data, the Actuaries Institute determined that just over half of the excess deaths (10300) for 2022 were due to COVID-19, but considered the pandemic likely played a role in other excess deaths as well, despite this not being reflected in the data.[143]

3.149The AIHW also used the ABS’ ICD-10 coded mortality data to determine that since the start of the pandemic there have been 10,279 deaths due to COVID-19, of which 123 were classified as being due to post COVID-19 condition. However, the AIHW also noted that:

In September 2020 WHO activated an…(ICD-10) code for post COVID-19 condition. Analysis of the use of the code in US health care records has shown that the uptake varies widely and currently underestimates the frequency of long COVID. As use of the code becomes more consistent, health care records will provide large and rich sources of data to understand the impact of long COVID, such as patterns of health service use among long COVID patients.[144]

3.150The Australian Private Hospitals Association told the Committee that while private hospitals provide many services that are potentially relevant to long COVID patients, data is scant on the number of long COVID patients admitted to private hospitals as the coding systems do not always capture this as the primary reason for admission.[145]

3.151The Burnet Institute suggested that a definition of long COVID that includes post-acute conditions could ‘inform better use of the [International Classification of Diseases] diagnosis code for post-acute COVID… and the medical certification cause of death’.[146]

3.152The Australian Dysautonomia and Arrhythmia Research Collaborative, University of Adelaide and the Australian POTS Foundation jointly submitted that autonomic dysfunction such as postural orthostatic tachycardia syndrome (POTS) has been found to be a common feature of long COVID. They expressed concern that POTS is under recognised by the Australian health sector and frequently coded incorrectly because it does not have a unique ICD code.[147]

3.153The Department advised that the Independent Health and Aged Care Pricing Authority (IHACPA) is currently working with the Commonwealth and states and territories to determine whether more specific codes are required to recognise specialised treatment provided for long COVID, or whether it can be treated through existing classifications.[148]

Medicare Benefits Schedule and long COVID data

3.154The Medicare Benefits Schedule (MBS) is a list of health professional services that the Australian Government subsidises. Each professional service in the MBS is allocated a unique item number, as well as an item descriptor, which outlines the service requirements. Information about MBS claims including benefits paid, patients and service providers is held by the Department of Health and Aged Care.[149]

3.155Several stakeholders raised their concerns with how the MBS operates with respect to treating long COVID. Issues with how the MBS fails to capture long COVID data also became apparent.

3.156The Department reported that it used MBS item data for preliminary work to identify the impact of long COVID. It advised that for the analysis, it needed to use the MBS items for ‘COVID-19 Management Service’ and prescriptions for antiviral medication as proxy indicators to identify whether a patient was being treated for post-COVID conditions.[150]

3.157The Australian Council of Deans of Health Sciences submitted that a barrier to capturing primary healthcare data ‘is the difficultly [sic] in extracting consultations related to long-COVID under the MBS chronic disease management items… this task would be more straightforward if there were to be MBS items specifically tailored to the needs of patients with long-COVID’.[151]

3.158However, changes to MBS items are not likely to be timely. As noted by the MBS Review Taskforce, it can take 12 to 18 months to implement changes as they require:

• regulatory changes
• mapping changes – advising practitioners, hospitals, insurers and other stakeholders
• updating IT payment systems
• updating MBS Online
• advising stakeholders through webinars and fact sheets.[152]

Committee comment

Research

3.159The Committee recognises that researchers around the globe are conducting research directly related to long COVID and exploring health issues such as excess mortality and post COVID complications including cardiovascular, neurological and endocrine morbidity.

3.160The Committee acknowledges the hard work of researchers from Australia and around the world in producing the long COVID data that is available today, and the ongoing work that governments in Australia are undertaking to improve data linkage.

3.161The Committee considers that the current government funding arrangements for long COVID-related research are fragmented and could be better coordinated given our small population relative to other advanced economies. Special consideration should be given to encouraging greater collaboration between researchers and institutes and better leveraging existing publicly funded institutions such as the ABS, to ensure long COVID research is targeted at knowledge gaps and scale.

3.162The Committee suggests consideration should be given to establishing a body focused on integrating research linking basic research with clinical trials and implementation. Consideration should additionally be given to reducing red tape to speed up ethics approvals.

3.163The Committee notes the particular need for research targeted towards understanding the causes of long COVID and supporting clinical trials for potential treatments and preventative interventions. The need for clinical trials is important to best identify evidence-based interventions given the burden long COVID is imposing on the health system.

3.164The Committee also notes with concern the lack of long-term health impact studies on COVID-19 in Australian children, the elderly and Aboriginal and Torres Strait Islander peoples.

Data

3.165The Committee notes that improved data collection is urgently needed encompassing underrepresented groups also. The Committee received evidence that establishes that a great deal of data gathering has occurred and several relevant databases are already in existence, however, there is little integration of these databases and some necessary data is still not being collected. The Committee agrees that there is a strong need for a comprehensive national database that captures broad information relevant to COVID-19, including diagnosed long COVID cases among the Australian population (including children) and long COVID symptoms, as well as management/treatment approaches and outcomes.

3.166The Committee is of the view that, based on the evidence received regarding COVID-19 vaccinations and their potential to reduce long COVID cases or severity, the database should also include vaccination rates of children and adults across Australian states and territories. This will facilitate ongoing public confidence in the COVID-19 vaccines.

3.167The Committee believes that this database should also collect data on COVID-19 vaccination side effects. The Committee has formed this view based on the evidence of some people’s experience with adverse reactions to COVID-19 vaccines. This particular data collection could be two-fold – the number of cases where a COVID-19 vaccination is believed to have played a role in a person’s death, and the number of cases where people have suffered a significant or severe physical injury as the result of COVID-19 vaccination.

3.168The Committee does not consider any recommendations are required at this time to progress additional long COVID codes considering the evidence provided by the Department of Health and Aged Care regarding ICD-10 AM classifications and ongoing work in this area.

3.169The Committee notes that MBS codes in relation to supporting patients with long COVID are discussed further in Chapter 6. The Committee also notes that the Government has been progressively implementing changes to the MBS in response to the MBS Review Taskforce’s recommendations, several of which relate to the management of chronic disease and may assist with the management of long COVID.[153]

Footnotes

[1]Western Health COVID Recovery Collaboration, Submission 493, p. 10.

[2]Professor Catherine Bennett and Dr Danielle Hitch, Submission 92, p. 2.

[3]See, for example: Adjunct Professor Giorgio Buonanno, Submission 130, p. 1; Distinguished Professor Lidia Morawska, Submission 304 (Attachment 1), pages 1–4.

[4]See, for example: Baker Heart and Diabetes Research Institute, Submission 138, p. 2; The University of Melbourne - Faculty of Medicine, Dentistry and Health Sciences, Submission 237, p. 7; National Heart Foundation of Australia, Submission 284, pages 4–5; Lung Foundation Australia, Submission 294, pages11–12.

[5]See, for example: Royal Melbourne Hospital, Submission 164, p. 2; Relationships Australia, Submission 245, p. 6; Australian Psychological Society & Phoenix Australia Centre for Posttraumatic Mental Health Ltd, Submission 501, p. 7.

[6]See, for example: Professor Andreas Suhrbier, Submission 103, p. 1; The Peter Doherty Institute for Infection and Immunity, Submission 291, pages 1–5.

[7]See, for example: Burnet Institute, Submission 149, pages 14–17; Associate Professor Anthony Byrne, Submission 155, p. 1; Australian National Phenome Centre, Submission 211, p. 5.

[8]Western Health COVID Recovery Collaboration, Submission 493, p. 10.

[9]Burnet Institute, Submission 149, p. 16.

[10]Queensland Health, Submission 150, p. 13.

[11]Queensland Health, Submission 150, p. 6.

[12]Murdoch Children’s Research Institute, Submission 178, p. 8.

[13]Murdoch Children’s Research Institute, Submission 178, pages 7, 8.

[14]Associate Professor Louis Irving, Royal Melbourne Hospital, Committee Hansard, Canberra, 12 October 2022, p. 3.

[15]UPcare Group, Submission 270, p. 3.

[16]The National Health and Medical Research Council is an independent statutory agency and the Australian Government’s key entity for managing investment in, and the integrity of, health and medical research.

[17]Professor Andreas Suhrbier, Submission 103, p. 1.

[18]Physical Containment (PC) levels refer to the classification of a microbiological laboratory that dictates the type of biological samples the laboratory is permitted to handle. PC1 items require the lowest level of containment.

[19]Professor Andreas Suhrbier, Submission 103, p. 1.

[20]Professor Andreas Suhrbier, Submission 103, p. 1.

[21]Dr Sharon Lewin, private capacity, Committee Hansard, Canberra, 17 February 2023, p. 54.

[22]National Clinical Evidence Taskforce (NCET), Submission 232, pages 11–12.

[23]Professor Mark Morgan, Royal Australian College of General Practitioners, Committee Hansard, Malvern, 20February 2023, p. 13.

[24]Various roundtable participants, Committee Hansard, Canberra, 17 February 2023, pages 57-60.

[25]UPcare Group, submission 270, p. 2.

[26]The University of Melbourne - Faculty of Medicine, Dentistry and Health Sciences, Submission 237, p. 6.

[27]The Medical Research Future Fund is an ongoing research fund set up by the Australian Government in 2015. Every year, the Government uses some of the net interest from this investment (currently A$20 billion) to pay for medical research initiatives such as the Clinical Trials Activity Initiative and the Genomics Health Futures Missions, amongst many others. See, Department of Health and Aged Care, About the MRFFwww.health.gov.au/our-work/medical-research-future-fund/about-the-mrff, viewed on 28March 2023.

[28]Department of Health and Aged Care, Submission 196, p. 11.

[29]Department of Health and Aged Care, Submission 196, p. 12.

[30]Department of Health and Aged Care, Submission 196, p. 12.

[31]Department of Health and Aged Care, Submission 196, p. 12.

[32]Associate Professor Anthony Byrne, Submission 155, p. 2.

[33]Royal Australian College of General Practitioners, Submission 168, p. 7.

[34]The National Institute for Health and Care Research is a English funding body that is connected to England’s National Health Service. The National Health Service is the publicly funded healthcare system.

[35]Professor Brendan Crabb AC, Chief Executive Officer and Director, Burnet Institute, Committee Hansard, Canberra, 17February 2023, p. 59.

[36]Australian National Phenome Centre, Submission 211, p. 3.

[37]The National Heart Foundation of Australia, Submission 284, pages 4–5.

[38]Long Covid Clinic St Vincent's Hospital Sydney, Submission 287, p. 6.

[39]Victorian Post-Acute COVID-19 sequelae research group, Submission 290, p. 10.

[40]The George Institute, Submission 514, p. 3.

[41]Department of Health (Western Australia), Submission 273, p. 5.

[42]Australian Society for Medical Research, Submission 242, p. 2

[43]Australian Society for Medical Research, Submission 242, p. 2.

[44]Emerge Australia, Submission 67, p. 13.

[45]Australian Academy of Health and Medical Sciences and the Australian Academy of Science, Submission165, p. 1.

[46]Institute for Evidence-Based Healthcare, Submission 195, p. 14.

[47]Moderna Australia, Submission 170, p. 3.

[48]Associate Professor Robyn Schofield, Associate Professor of Atmospheric Chemistry, University of Melbourne, Committee Hansard, Malvern, 20 February 2023, p. 21.

[49]The term ‘biomarker’ refers to almost any measurement reflecting an interaction between a biological system and an environmental agent, which may be chemical, physical or biological.

[50]Associate Professor Anthony Byrne, Submission 155, p. 1.

[51]Professor Jeremy Nicholson, Director, Australian National Phenome Centre, Committee Hansard, Malvern, 20February 2023, pages 32-33.

[52]Professor Jeremy Nicholson, Director, Australian National Phenome Centre, Committee Hansard, Malvern, 20February 2023, p. 33.

[53]Western Health COVID Recovery Collaboration (WHCOVRE), Submission 493, p. 10.

[54]Australasian College of Nutritional and Environmental Medicine, Submission 434, p. 8.

[55]Associate Professor Shidan Tosif, Consultant, General Medicine, and Clinical Lead, Post-COVID Clinic, The Royal Children’s Hospital, Committee Hansard, Canberra, 12 October 2022, p. 8.

[56]Victorian Department of Health, Submission 87, p. 3, citations omitted.

[57]Diabetes Australia, Submission 209, p. 5.

[58]Stroke Foundation, Submission 338, p. 2.

[59]The Florey Institute of Neuroscience & Mental Health, Submission 534, pages 2–3, citations omitted.

[60]The Australian POTS Foundation and the Australian Dysautonomia and Arrhythmia Research Collaborative, University of Adelaide, Submission 167, p. 3, citations omitted.

[61]Baker Heart and Diabetes Institute, Submission 138, pages 1-2.

[62]National Heart Foundation of Australia, Submission 284, p. 2.

[63]Burnet Institute, Submission 149, p. 16.

[64]Professor Brendan Crabb AC, Chief Executive Officer and Director, Burnet Institute, Committee Hansard, Malvern, 20 February 2023, p. 7.

[65]Australasian Society of Clinical and Experimental Pharmacologist and Toxicologists, Submission275, p. 1.

[66]Associate Professor Nada Hamad, Submission 335, p. 7.

[67]Professor Julie Leask, private capacity, Committee Hansard, Canberra, 17 February 2023, p. 50.

[68]Australia Long Covid Community Facebook Group, Submission 309, p. 20.

[69]National Aboriginal Community Controlled Health Organisation, Submission 477, p. 3.

[70]Ms Penelope McMillan, Spokesperson, ME/CFS Australia, Committee Hansard, Canberra, 17 February 2023, p.51.

[71]See, for example: Name withheld, Submission 16, p. 1; Name withheld, Submission 17, p. 1; Name withheld, Submission 31, p. 1; Caroline Molloy, Submission 43, p. 1; Dr Anita White, Submission 238, p. 5; COVID Safe Schools Inc, Submission 306, p. 3.

[72]See, for example: Australian Education Union, Submission 276, pages 4-5; COVID Safe Schools Inc, Submission 306, pages 3-6.

[73]National Clinical Evidence Taskforce (Monash University), Submission 232, p. 14, citations omitted.

[74]National Clinical Evidence Taskforce (Monash University), Submission 232, p. 14.

[75]Murdoch Children's Research Institute, Submission 178, p. 9.

[76]The University of Melbourne - Faculty of Medicine, Dentistry and Health Sciences, Submission 237, p. 3.

[77]Royal Australasian College of Physicians, Submission 249, p. 9.

[78]Australian Institute of Health and Welfare, Older Australians, www.aihw.gov.au/reports-data/population-groups/older-people/overview, viewed 27 March 2023

[79]The University of Melbourne - Faculty of Medicine, Dentistry and Health Sciences, Submission 237, p. 3.

[80]Professor Michael Kidd AM, Deputy Chief Medical Officer, Department of Health and Aged Care, CommitteeHansard, Canberra, 17 February 2023, p. 12.

[81]Australian Institute of Health and Welfare, People with disability in Australia, www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability, viewed on 27 March 2023.

[82]Australian Institute of Health and Welfare, People with disability in Australia, www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability, viewed on 27 March 2023.

[83]Advocacy for Inclusion – Incorporating People with Disabilities ACT, Submission 336, p. 4.

[84]Advocacy for Inclusion – Incorporating People with Disabilities ACT, Submission 336, p. 4.

[85]Relationships Australia, Submission 245, p. 2.

[86]Relationships Australia, Submission 245, p. 3.

[87]La Trobe University, Submission 246, pages 2–3.

[88]Department of Health (Victoria), Submission 87, pages 2–3.

[89]Exercise and Sports Science Australia, Submission 169, p. 8.

[90]Western Health COVID Recovery Collaboration (WHCOVRE), Submission 493, p. 7.

[91]Australian Council of Deans of Health Sciences, Submission 183, pages 3–4.

[92]COVID Safe Schools Inc, Submission 306, p. 8.

[93]Australian Education Union, Submission 276, p. 7; Australian Education Union, Submission 276.1, p. 2.

[94]National Centre for Neuroimmunology and Emerging Diseases, Submission 215, p. 13.

[95]National Centre for Neuroimmunology and Emerging Diseases, MHIQ, Griffith University, Submission 215, p.14.

[96]Australian Psychological Society & Phoenix Australia Centre for Posttraumatic Mental Health Ltd, Submission 501, p. 7.

[97]MSD Australia, Submission 452, p. 9.

[98]Australian Academy of Health and Medical Sciences and the Australian Academy of Science, Submission165, p. 6.

[99]Department of Health and Aged Care, Submission 196 (Attachment 1), p. 25.

[100]Australian Bureau of Statistics, Multi-Agency Data Integration Project (MADIP) Research Projects, www.abs.gov.au/about/data-services/data-integration/integrated-data/multi-agency-data-integration-project-madip/multi-agency-data-integration-project-madip-research-projects, viewed 22 March 2023.

[101]Professor Raina MacIntyre, Submission 300, p. 1.

[102]Mama Health Technologies gmbH, Submission 313, p. 2.

[103]Mama Health Technologies gmbH, Submission 313, p. 5.

[104]Australian Health Services Research Institute, Submission 342, p. 3.

[105]Dr Golo Ahlenstiel, Clinical Network Director, Specialty Medicine, Western Sydney Local Health District, Committee Hansard, Liverpool, 5 December 2022, p. 11.

[106]National Clinical Evidence Taskforce (Monash University), Submission 232, p. 6.

[107]Professor Paul Kelly, Australian Government Chief Medical Officer, Department of Health and Aged Care, Committee Hansard, Canberra, 17 February 2023, p. 11.

[108]Dr Nick Drengenberg, Submission 68, p. 2.

[109]Allied Health Professions Australia, Submission 269, p. 23.

[110]This is confirmed by the Australian Institute of Health and Welfare. See, Australian Institute of Health and Welfare, Australia’s health 2022: data insights- Chapter 1: The impact of new disease: COVID-19 from 2020,2021 and into 2022, www.aihw.gov.au/getmedia/c91a05ef-307f-4c18-8ed3-dfe33d0c603d/aihw-aus-240.pdf.aspx?inline=true, p. 2, viewed 3 April 2023.

[111]Moderna Australia, Submission 170, p. 12.

[112]National Aboriginal Community Controlled Health Organisation, Submission 477, p. 7.

[113]Ms Kristy Crooks, PhD Scholar, APPRISE, Committee Hansard, Canberra, 17 February 2023, p. 47.

[114]Murdoch Children's Research Institute, Submission 178, p. 10.

[115]Australian and New Zealand Paediatric Infectious Diseases Group, Submission 214, p. 1.

[116]Australian and New Zealand Paediatric Infectious Diseases Group, Submission 214, p. 1.

[117]National Disability Services, Submission 460, p. 4.

[118]Department of Health (Victoria), Submission 87, p. 2.

[119]The Yorkshire Rehabilitation Scale is a digital assessment and monitoring tool to remotely manage individuals with persistent COVID systems, used by the United Kingdom’s National Health Service.

[120]Department of Health (Victoria), Submission 87, p. 8.

[121]National Centre for Neuroimmunology and Emerging Diseases, MHIQ, Griffith University, Submission 215, p.14.

[122]Department of Health and Aged Care, National Notifiable Diseases Surveillance System (NNDSS), www.health.gov.au/our-work/nndss, viewed 3 April 2023.

[123]Department of Health and Aged Care, National Notifiable Diseases Surveillance System (NNDSS), www.health.gov.au/our-work/nndss, viewed 3 April 2023.

[124]The Australian Nursing and Midwifery Federation, Submission 210, p. 6.

[125]National Clinical Evidence Taskforce (Monash University), Submission 232, p. 2, citations omitted.

[126]National Clinical Evidence Taskforce (Monash University), Submission 232, p. 2.

[127]Pathology Technology Australia, Submission 244, pages 3, 6.

[128]Professor Martin Hensher, Submission 175, p. 2.

[129]Professor Martin Hensher, Submission 175, p. 3.

[130]Australian Healthcare and Hospital Association, Submission 285, p. 6.

[131]See, for example: Name withheld, Submission 109, p. 3; Minister for Health and Wellbeing, SA, Submission200, p. 3; PfizerAustralia, Submission225.1, p. 3; Ruth Newport, Submission 231, p. 7; Namewithheld, Submission341, p. 6; Dr Anne Fletcher and Dr Luke Fletcher, Submission 436, p. 16; Namewithheld, Submission 539, p. 14.

[132]Dr Anne Fletcher and Dr Luke Fletcher, Submission 436, p. 16.

[133]Professor Steven Faux and Associate Professor Anthony Byrne, Submission 544, p. 2.

[134]Suicide Prevention Australia, Submission 203, p. 4.

[135]National Aboriginal Community Controlled Health Organisation, Submission 477, p. 3.

[136]Professor Margaret Hellard, Deputy Director, Programs, Burnet Institute, Committee Hansard, Canberra, 17February2023, p. 53.

[137]World Health Organization, Importance of ICD, www.who.int/standards/classifications/frequently-asked-questions/importance-of-icd, viewed 3 April 2023.

[138]Independent Health and Aged Care Pricing Authority, ICD-10-AM/ACHI/ACS, www.ihacpa.gov.au/health-care/classification/icd-10-amachiacs, viewed 3 April 2023.

[139]Department of Health and Aged Care, Submission 196, p. 29.

[140]Australian Bureau of Statistics, Measuring Australia’s excess mortality during the COVID-19 pandemic, www.abs.gov.au/articles/measuring-australias-excess-mortality-during-covid-19-pandemic#measuring-excess-mortality, viewed 3 April 2023.

[141]Australian Bureau of Statistics, Measuring Australia’s excess mortality during the COVID-19 pandemic, www.abs.gov.au/articles/measuring-australias-excess-mortality-during-covid-19-pandemic#measuring-excess-mortality, viewed 3 April 2023.

[142]OzSAGE, Submission 299, p. 10.

[143]Actuaries Institute Australia, Media releases: 6 March 2023: Excess deaths climb to nearly 20,000 for Australia in 2022, www.actuaries.asn.au/Library/MediaRelease/2023/230306MRCOVID19.pdf, viewed 3April2023.

[144]Australian Institute of Health and Welfare, Long COVID in Australia – a review of the literature, www.aihw.gov.au/reports/covid-19/long-covid-in-australia-a-review-of-the-literature/summary, viewed 6 March 2023.

[145]Australian Private Hospitals Association, Submission 555, p. 1.

[146]Burnet Institute, Submission 149, p. 2.

[147]Australian Dysautonomia and Arrhythmia Research Collaborative, University of Adelaide and the Australian POTS Foundation, Submission 167, p. 4.

[148]Department of Health and Aged Care, Submission 196, p. 21.

[149]Australian Institute of Health and Welfare, Medicare Benefits Schedule (MBS) data collection, www.aihw.gov.au/about-our-data/our-data-collections/medicare-benefits-schedule-mbs, viewed 3 April 2023.

[150]Department of Health and Aged Care, Submission 196, pages 10–11.

[151]Australian Council of Deans of Health Sciences, Submission 183, p. 3.

[152]Department of Health and Aged Care, Medicare Benefits Schedule (MBS) Review, www.health.gov.au/our-work/mbs-review, viewed 3 April 2023.

[153]See, Medicare Benefits Schedule Review Taskforce, An MBS for the 21st Century: Recommendations, learnings and ideas for the future, www.health.gov.au/sites/default/files/documents/2020/12/medicare-benefits-schedule-review-taskforce-final-report-an-mbs-for-the-21st-century-recommendations-learnings-and-ideas-for-the-future.pdf, viewed 3 April 2023.