People at heightened risk of deterioration from COVID-19: living ‘with’ or living ‘despite’ public health communications?

Introduction

The coronavirus pandemic has produced the most serious global public health emergency in a generation. Since the pandemic was declared in early 2020, governments worldwide have enacted and adjusted a range of public health measures to control transmission, protect health services, and lower morbidity and mortality at a population level. Against a backdrop of widespread community vaccination, Australia has recently shifted from the acute phase of the emergency towards a longer-term ‘living with COVID-19’ phase. Public health messaging now emphasises the role of informed personal choice with respect to COVID-19 exposure. Yet within this ‘living with COVID-19’ messaging, the needs of those most at risk of deterioration from the disease are almost entirely absent. There is neither recognition of the diverse range of people at heightened risk within the community nor acknowledgement of their need for tailored, evidence-based information and supports to enable them to manage their risk against a background of high community transmission. In this commentary, we explore this issue of informed decision-making related to COVID-19 and argue that there is urgent need to address this gap so that vulnerable groups can meaningfully apply public health advice to make informed decisions and to live safely and well with COVID-19.

Preventative public health messaging to protect health

Early preventative public health responses focused on implementing physical distancing measures to counteract COVID-19 transmission in the absence of effective treatments or vaccines.1, 2, 3 The success of such measures in counteracting COVID-19 depended fundamentally on whole populations taking up and adhering to required measures (e.g., restricted gatherings, isolation, mask wearing).⁴ At different timepoints, variably across Australian states, such measures have been enforced or mandated by government. In the most effective cases, the required behavioural changes were supported by both extensive public health communications to convey the importance of adhering to public health measures, and concrete, actionable messaging about what people needed to do to keep themselves safe.

The requirements of communicating complex public health advice in emergency situations are substantial and well-documented. Information must be clear and up-to-date, from trusted sources, accessible, consistent, and reach all members of the community equally (regardless of preferred language or access to different forms of media) to enable people to understand what is required and to act.1, 2, 3 ^, 5, 6, 7 Many groups within the community are less likely to be reached by public health messaging or less able to take up certain measures. This includes people with lower health literacy levels; those who are socially, medically, or economically disadvantaged; those from culturally diverse backgrounds who may or may not prefer to communicate in a language other than English; and those from vulnerable groups (such as people with disability, mental health conditions, experiencing homelessness).4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14 A lack of targeted communication for some of these groups results in much higher risks of being influenced by circulating misinformation and disinformation¹⁵ and in failure to adhere to recommended preventive actions.^{5 , 11}

Successive pandemic waves, and population-wide vaccination rollout, have required governments and health authorities to proactively communicate and adjust messaging over many months,^{3 , 8} sometimes on a daily basis, to reflect changes to the situation within Australia. There is now a large body of evidence to inform how this can be done well, and although it is arguable how well authorities within Australia and internationally have followed good practices, there are generally now high levels of knowledge across most populations about COVID-19 disease, symptoms and risk mitigation actions.¹⁶

Community shift towards personal responsibility and business as usual

Widespread vaccination has reduced the risk of high mortality rates and overburdened hospitals, resulting in public health advice moving broadly from population-wide preventative measures to a more specific model of personal decision-making. The availability of vaccination and booster shots, and more recently, antivirals, has led many people to feel relatively less alarmed about contracting COVID-19 despite high community levels of circulating virus and an emerging understanding of the likely prevalence and severity of long-COVID. Over time, lowered perceived risk coupled with growing pandemic fatigue has led many to a degree of complacency about contracting COVID-19 and the need to adhere to preventive risk mitigation measures.^{1 , 16}

To a large extent, this has enabled life to return to a more normal state for many, reflected by reopening of schools and workplaces and re-engagement with hospitality, entertainment and travel. This return to near-normal activity has also led to soaring rates of community transmission, particularly as new COVID-19 variants have emerged. Fortunately, high vaccination rates have prevented an equivalent rise in numbers hospitalised or of people dying from the virus. However, public health measures and accompanying messaging that characterised the earlier pandemic response have now largely been abandoned in favour of a focus on vaccination to mitigate the impact of COVID-19.

Within the mix of public health messaging over the pandemic, there has long been recognition of the need to protect the health of those at heightened risk of severe disease or death.^{3 , 5 , 9 , 10 , 17 , 18} This includes older people, those with chronic disease or who are immunocompromised (collectively termed ‘vulnerable’), the focus of this commentary. For such people, living with COVID-19 continues to be uncertain as there is a need to continue to enact protective measures even while the rest of the community returns to COVID-normal life.^{11 , 16 , 18 , 19}

The recent relaxation of public health measures both in Australia and overseas, while COVID-19 variants continue to circulate widely, has made this tension even more manifest during 2022. There is now growing disparity between those able to participate in a more normal life with high circulating COVID-19 levels and those who must navigate their own elevated risk against this backdrop.

Heightened risk and ‘living with COVID-19’

In this situation, people at heightened risk must take on personal responsibility for assessing and negotiating everyday activities to minimise their own risk of contracting disease.^{5 , 10 , 11} This decision-making can only happen in a meaningful way when individuals can access accurate, evidence-based information about what they can, and cannot, safely do.^{1 , 8 , 18} Despite clear guidance from peak bodies globally,^{2 , 3 , 7 , 8 , 13} and some examples of successfully tailored materials within Aboriginal and CALD communities within Australia,^{3 , 7 , 8} information to more broadly support vulnerable groups to live well through the pandemic is largely absent. How then can vulnerable people truly live with COVID-19, rather than live in isolation from the rest of the community, until the pandemic ends?

The number of people at heightened risk of COVID-19 within Australia is not small. Estimates suggest that almost half of Australians have at least one chronic condition, and almost 20% have two or more.²⁰ Not all of these people will be at heightened risk from COVID-19, but even if only a fraction are then these issues directly concern a substantial number of Australians. The pandemic is now in its fourth year, with little sign of abating,²¹ and clear public health advice to support those in vulnerable groups is urgently needed. Without this, people at heightened risk must continue to navigate life in parallel, relatively isolated from the rest of the community, with the now well-documented negative outcomes that this brings.^{5 , 9 , 10} Additionally, long-standing healthcare access issues are exacerbated by new risks posed by COVID-19, further widening inequality between the well and the vulnerable.^{3 , 5 , 10} Requiring vulnerable people to isolate indefinitely into the future, without access to accurate information to inform decisions about risk can only be viewed as a failure of public health policy.

Addressing the gap

We contend that there are several clear ways this tension can be reduced. All rest on providing people at heightened COVID-19 risk with clear, accessible, tailored information and public health advice to support informed choices about their own risk in relation to COVID-19. There is also a need to recognise the continually changing context in which individuals are managing COVID-19 and that tailored advice must be timely and up-to-date.¹ Additional supports for decision-making, and practical supports tailored to need,^{2 , 10 , 19} are also part of addressing this major gap in public health policy and practice.

First, there should be clear and explicit recognition of the range of issues that exist in daily life for people who are managing chronic diseases or are at otherwise heightened risk against the backdrop of COVID-19.¹⁰ Recognition of this is important as this group cannot be considered (clinically or from a public health perspective) to be at the same risk as the rest of the community. Neither can they be considered a homogeneous group. The decisions required of an older person at heightened risk are, for instance, not the same as those of a working mother with school-aged children or a university student undertaking study and work. Public health messaging about those at heightened risk typically implies that such people are older, frailer and living quiet lives in relative isolation irrespective of the pandemic. This may stem from the identification of older adults as a particular at-risk group for COVID-19,^{14 , 17} but there now needs to be clear recognition that the group of people at heightened risk encompasses a far more diverse range of people across the lifespan and across life circumstances.^{5 , 10 , 11 , 14 , 16}

Public health messaging and information then needs to consider this diverse group as a specific audience and recipient of actionable messages. Tailored, evidence-based information and solutions must be provided to this audience, with recognition that this information will need to be continually updated.^{1 , 2 , 8 , 10 , 16 , 19}

Developing such tailored advice and support requires a range of activities to occur.

• 1.Engaging with people at heightened risk, and the organisations that service them, to determine directly what their main concerns or challenges are in living with COVID-19 and to learn how they are managing risk (devising and sharing solutions) in an environment of increased COVID-19 transmission.^{1 , 13 , 15 , 19}
• 2.Collecting and making sense of better individualised risk data to inform communications and public health messaging. Such communications must be tailored to need and pre-tested with users drawn from diverse community groups.¹²
• 3.
  Advising about public health measures to be continued (e.g., mask wearing and physical distancing in high(er) risk settings) and communicating with the entire community so that everyone understands why this is necessary to protect those at heightened risk.¹⁹ Effective communication needs to:

  • o
    present clear, timely, consistent messages from trusted sources
  • o
    be framed with awareness that messages will need continual updating for new evidence
  • o
    be tailored to ensure accessibility and reach throughout the community and to different groups at heightened risk
  • o
    provide actionable advice so that people can act to protect their health and that of others^{1 , 2 , 8 , 10 , 12 , 16 , 19}
• 4.Acknowledging where information is not yet available. Clearly and transparently communicating about uncertainties is key to maintaining community trust in public health measures.^{11 , 16}
• 5.Developing decision support tools to support common decisions.

The need for accurate, timely, up-to-date information to support public health measures to protect health has been highlighted since the very earliest days of the pandemic, as has the critical role for community engagement and the need for practical supports.^{1 , 6 , 11 , 13 , 14} Vulnerable groups, including those at heightened risk of deteriorating due to COVID-19, are disproportionately disadvantaged by the pandemic.⁸ It is therefore not surprising that consequent negative social, economic, health and other impacts have emerged and are notable.^{9 , 10 , 16 , 19} Despite massive growth in research related to the pandemic and to public health controls across the world, very little squarely addresses the needs of those at heightened risk. Within Australia as we work to control and contain COVID-19 over the remaining course of the pandemic, we cannot consider to have successfully lived with COVID-19 while those at heightened risk remain on the isolated fringes of society.

Conclusions

In the face of widespread apathy, there is an urgent need for leadership and continued public health action to reduce the impacts of the pandemic. Directly recognising and addressing these issues for those at heightened COVID-19 risk is a major, pressing priority and represents a huge unmet need within the Australian community.

Funding

Rebecca Ryan receives support for her position as Coordinating Editor of the Cochrane Consumers and Communication Group under the NHMRC funding to Australian Cochrane Groups (2020-2023).

Conflict of interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.