Introduction by Croakey: Calls to engage consumer representatives in the public health response to COVID-19 are growing ever louder as the pandemic continues.
Early in the pandemic, Health Issues Centre CEO Danny Vadasz wrote that community consultation was key to maintaining trust and engagement.
“It’s one thing to act unilaterally when you’re bailing the lifeboat, it’s another to not consult when deciding in which direction to row,” he wrote in Croakey.
The Consumers Health Forum of Australia (CHF) also convened a Consumer Commission to help to identify and develop the lessons learned from the COVID-19 experience. The Commission subsequently made 23 recommendations for change in its Making Health Better Together report.
“Consumers’ lived experiences are critical to understanding what works, where the gaps are, and what changes are needed to improve outcomes,” Leanne Wells, CHF CEO, wrote.
Anne McKenzie from the Telethon Kids Institute, who was recently awarded the 2021 NHMRC Consumer Engagement Award, has also advocated for consumer involvement in urgent COVID-related research over the past year.
Last year, consumer advocate Anne Cahill Lambert found herself at the centre of conflicting state policies when she was stranded at the NSW/Victorian border for several days.
Now, with the nation on high alert with around half the population in lockdown, Cahill Lambert writes that it’s high time to re-engage with consumers to help to ensure that public health interventions are well communicated and proportionate to risk.
Anne Cahill Lambert writes:
During the first year of the pandemic, decisions had to be made at short notice about a range of issues from the provision of health care and education to law and order and the economy.
Australians have been generally accepting of these rapid decisions – bar a tiny, but vocal, minority who, before vaccines were available, wanted to let the virus run and adopt a herd immunity mentality.
Australia has managed the pandemic remarkably well compared with other countries. We have been well served by Australia’s chief health officers (CHOs) who have worked tirelessly to protect Australians.
Straining goodwill?
I understand that, initially, decisions had to be made quickly and that the processes of consumer engagement that we have come to expect in the Australian healthcare system went by the wayside.
Now, however, we are well into our second year of the pandemic and I wonder whether we are sapping the goodwill of the community by continuing to exclude consumers from the decision-making process.
We know that there is much better uptake of health policy if consumers are genuinely engaged as equal partners in decision-making processes.
August organisations such as the Australian Commission on Safety and Quality in Health Care and the National Health & Medical Research Council have recognised the importance of involving consumers as an essential component in improving quality, safety and health outcomes.
Surely it is time now to re-engage consumers as equal partners with healthcare professionals, bureaucrats, and others, in decision-making processes. A few cases spring to mind where consumer input may have made a difference.
Different approaches
My friends travelled to the UK when their daughter became critically ill; all were vaccinated. Eventually, my friends brought their daughter back to Australia, and submitted a detailed plan for home quarantine to two jurisdictions – the first jurisdiction where their plane landed, and the second at their home.
The first jurisdiction refused the request, so the second jurisdiction didn’t bother considering it. Ultimately, they were quarantined in a medi-hotel. It was nice accommodation in what is normally a serviced apartment, but the kitchen was disabled so they weren’t even able to make themselves toast.
And yet, two Federal government ministers recently travelled overseas and on return they were allowed to quarantine at home. Indeed, any Federal minister who has travelled overseas during the pandemic has not been subject to the same hotel quarantine requirements as the general public. And on returning from the G7 Summit recently, the Prime Minister was able to comfortably quarantine at The Lodge.
I am struggling with the concept of equity and fairness in these separate approaches.
This is not an isolated case; other examples of when consumer voices may have made a difference include:
- An eight-year-old lad recently drowned on a school camp in western Victoria. A request was made for the rules around funerals during lock down (only 10 people were allowed to attend) to be waived so that his school mates and the community could support one another. There was no COVID in the area, but Regional Victoria was locked down to avoid city residents from travelling to the regions. The request was refused. The CHO said he was not personally involved in this decision and did not know the reasoning for the decision.
- A Victorian (vaccinated) family recently returned home from Doha. They were quarantined in Brisbane. Unfortunately, an emergency caesarean section, was required and the father was not granted an exemption to attend the birth. Neither parent was allowed to see or hold the baby after an immediate transfer to the hospital’s neonatal intensive care unit. The principles around the importance of bonding have just been thrown out with the bathwater, despite the development of a detailed plan to keep everyone, especially staff, safe.
- Despite a directive that Victorians are not allowed to enter South Australia, arrangements were made for the Collingwood AFL team to enter the state to play against Adelaide. Almost 31,000 spectators attended, and they were advised before the game to “duck and just do not touch that ball” should one of the potentially infected Collingwood players kick the ball into the crowd.
- I was recently in Victoria at the border when the lockdown was announced to come into effect at 11:59 pm. NSW announced its new restrictions to come into effect at 4 pm while the ACT also went for 11:59 pm. Surely, we can have harmony on this simple issue?
- And in one of Australia’s most dramatic weeks since the pandemic began, most jurisdictions are applying different rules to other jurisdictions. For example, the ACT was deemed to be an “orange zone” by Victoria – despite no COVID cases there in just under a year. WA has declared the ACT a “low risk” jurisdiction. Surely the same nomenclature could be used to assist all Australians in assessing their travel plans. Despite no COVID in most of regional NSW, tight travel restrictions have been applied to these citizens if they wish to cross borders and, indeed, most other jurisdictions are refusing to allow any NSW resident to cross their border.
- The vaccination messaging for people between the ages of 18 and 60 became a quagmire after National Cabinet on 28 June 2021 when it was announced that this cohort could ask for the AstraZeneca vaccine. Consumer input may have helped massage this announcement so that the general public is not left wondering whether anyone knows what’s going on.”
Negotiating nuances
There may be solid rationales behind some decisions which, to an outsider, seem irrational. For example, the decision to remove 32 Melbourne passengers from the Ghan, while allowing others who had shared this confined space, to continue the journey. Had a consumer been involved in this decision-making tree, they may have been able to contribute to the framing of public health messaging or to highlight to public health officials the mixed messaging. These passengers would have been walking up and down the train carriages – potentially a Ruby Princess on the rail track.
Like everything in this complicated health system, there are nuances. But shutting consumers out of the development of health policy is not a good outcome, and may be contributing to issues such as the slow and rocky vaccine rollout.
We are certainly surviving this pandemic thanks to the good work of the states and territories. However, there are now many inconsistencies and, indeed, seemingly heavy handedness in some of these decisions.
We need a process that re-introduces the concept of public health interventions being proportionate to risk. Given the importance of the multi-jurisdictional Australian Health Protection Principal Committee in managing the pandemic, I am unsure as to the reasoning for not including consumers on this panel.
Consistency and transparency seem to be lacking in some approaches that should accommodate the actual location of outbreaks, whether people have been vaccinated, or whether interventions are proportionate to risk.
I know many of us are grateful to the CHOs for their tireless work. It’s now time, though, to engage consumers in policy decisions and to return to one of the key public health principles of interventions being proportionate to risk.
Anne Cahill Lambert, AM, has worked and volunteered in the health system for more than 40 years. She has a particular focus on ensuring that the voice of consumers is heard. She is on Twitter @ACLambert
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