“Lessons for consumers from COVID-19” was the theme we asked our contributors to write about for this edition of Health Voices. Their responses have been enlightening, innovative and disruptive. And I must say often encouraging.
In calling on their own thoughts and experience with COVID, the authors have described diverse developments that have been propelled by the forces of the pandemic. These range from the growth in health knowledge and organisational change, to catalysts for technical advances like digital health, to the greater acknowledgement of equity in health and the central role of the social determinants of health.
And from a dark place — the tragic mismanagement of aged care — has come the stark imperative for a fundamental overhaul of arrangements for the care of elderly people.
Australians can be thankful to our leaders and health staff that, at this stage at least, we seem to have turned back the advance of COVID. A more enduring outcome we must strive for is to put the best lessons into practice.
COVID has the pivotal part that consumer leadership and co-design can play in shaping better health policy and services.
Health Consumers Queensland and the Queensland Government demonstrated from early in the pandemic the value of consumer involvement. HCQ’s CEO Melissa Fox describes how consumer representatives were involved at almost every level of the public health system’s response to the pandemic, including in key departmental working groups focused on emergency, ICU, surgical, outpatient planning and COVID-positive models of care.
For health consumer networks around Australia, HCQ’s experience can provide a window into the benefits of partnering openly and meaningfully with the community, says Melissa. “Now, more than ever – nothing about us, without us.”
The paradox and challenge of COVID is adeptly expressed by Jeffrey Braithwaite. “Staying in touch while keeping your distance.” Learning how to deliver care to people wherever they are in Australia, when they need it and in a form the health system can sustain long term, even in the face of a pandemic, it turns out, is the only way to go. “Keeping everyone in touch, but at a distance where appropriate.”
Joseph Ibrahim tracks through seven lessons to be learned from the aged care catastrophe, including for government and providers. His conclusion is that the pandemic shone a spotlight on the long-established failures within the aged care system. “This should galvanise the community to start holding the government, regulator and providers accountable for their actions and inactions.”
For many people, their COVID focus has been on effective treatment and we are fortunate to have consumer input in the guidance of theNational COVID-19 Clinical Evidence Taskforce. Its Executive Director, Julian Elliott, says the Evidence Team works around the clock to rapidly identify, evaluate and summarise global COVID-19 research findings. Consumers can be assured that living guidelines recommendations are always based on the latest high-quality evidence and expert review. The pandemic has highlighted the importance of clear, consistent and trustworthy guidance for clinicians, and for consumers to understand treatment options. Consumer input and feedback aims to ensure the guidelines can assist people experiencing COVID-19, their families and carers.
At a local level, Primary Health Networks across Australia have proven their worth as trusted sources of comprehensive localised COVID-19 information and resources for GPs, writes Susi Wise. The North Western Melbourne PHN, local GPs and the Royal Melbourne Hospital collaborated on development of an integrated model of care for COVID-19 positive patients. The pathway was informed by the experience of residents of Victoria’s public housing towers. The outcome ensured people could safely self-isolate, enabled early identification of deterioration and provided GPs with the support needed to confidently manage low risk patients in the community.
As Laila Hallam writes, the disruption of COVID focused our systems. “Crisis brought out their best. The glacial pace of system-wide change was replaced with significant, adaptive and rapid change. Resources were re-prioritised, reorganised, consolidated and adapted.” The downside was that whilst decisions were made with deep knowledge to the medical and system repercussions, without consumers present, the repercussions on patients and citizens had no voice devoted to advocate for them.
In some instances, James Smith says, COVIDhas exacerbated already well documented health inequities, such as those relating to race and ethnicity, socio-economic status, homelessness, disability, and ageing. “In other instances, it has created new and unforeseen inequities, particularly with respect to education and employment.”
Penny Dakin states that first, we must learn and remind ourselves that as citizens we are consumers of government policy, and as consumers we have rights and power. As consumers (and in most cases, taxpaying funders of these services) we should be making clear to governments that we understand the social determinants of health, and that we expect them to act to address these.
Leanne Beagley says the COVID-19 tail may not even be visible yet, but how we prepare our people and communities to handle its impact will be vital. It will be what we do today, when it comes to policy development and implementation, and when it comes to responding to the many recommendations in the Productivity Commission Inquiry into Mental Health, or when it comes to developing programs that are holistic and address the many social factors that often contribute to mental illness.
One such factor is loneliness, identified as a growing problem before the onset of the pandemic, says Michelle Lim. It has been highlighted as an important issue since the implementation of public health social restriction practices. To effectively combat loneliness, we need to rectify misconceptions about loneliness so that we can also adopt more innovative approaches that can consider the complexity of this important health, social, and community issue.
Aswe begin to look beyond COVID-19, we can learn from the experiences of people living with chronic disease to improve our health system, Emma Lonsdale. Access to information, ongoing care, and mental health support are core pillars to support people with chronic conditions during and after COVID-19.
And that’s where health literacy can play a big role. Julie Ayre and Kirsten McCaffery write that people with inadequate health literacy regarded the pandemic as a less serious public health threat and regarded social distancing as less important. They were more likely to endorse statements about misinformation: that the effectiveness of vaccines is made up, the threat of coronavirus is greatly exaggerated, the benefits of herd immunity for coronavirus are being covered up, and that government restrictions are stronger than what is needed.
Communicating COVID information to Culturally and Linguistically Diverse communities has been a challenge. Helen Skouteris writes that knowing how to best do this involves genuine co-design – collaborating with consumers and community to design solutions that solve problems in a way that values and meets their needs. CALD community leaders and bi-cultural health workers in Australia have recommended that a national advisory body is established to advise authorities on public health messaging and interventions across CALD communities to ensure their voice is heard and understood.
The pandemic has also emphasised the need to better capture the voice of people living with a rare disease and for this to be effectively communicated back to decision-makers. Nicole Millis says developing the capacity of rare disease organisations to represent their community to stakeholders such as Government, is critical. COVID-19 has presented the case for ongoing systemic policy change.
Tim Shaw writes of thesweeping changes offered by digital health that COVID has brought closer to reality in areas including support at home for those with chronic illness. But he says: “I think the greater challenges are non-technical. We need to understand the cultural changes required from a government, service, clinician and consumer viewpoint to routinely implement new models of care. We need to establish the evidence base that new models of care are effective and an improvement on current practice.”
Ravini Fernando says the digital revolution spurred by COVID-19 is truly enabling us to turn the vision of seamless health care into reality. We have the unique opportunity to take a holistic, patient-centred approach in providing value-based care to every single Australian.
And finally, we conclude with observations from two individuals whose experience has been at the “sharp end” of the pandemic: the emergency department, and infection prevention and control
John Bonning writes that far too many healthcare workers were infected, impacting their colleagues and families, and stretching the ability of parts of healthcare systems to maintain services. Consumers, he says, have a key role to play in advocating for safer EDs and better health systems in the new COVID normal. Joint advocacy can help us engage a broader range of stakeholders with these important issues. Seizing on lessons learned and unprecedented levels of co-operation, there can be no going back. We must address healthcare inequity; push for equitable resourcing of rural and regional emergency care; and find holistic improvements to mental healthcare systems.
Phil Russo concludes: “So if we are to look for any benefits coming from this pandemic, the significant improvement of infection prevention literacy and knowledge in both clinicians and consumers is certainly a major one. It is with quiet delight that I hear friends and family discuss the pros and cons of physical distancing and masks. Never did I imagine that I would see primary school kids lining up to use hand rub as they enter classrooms.
“Infection prevention is everybody’s business”.