Partnering with consumers during a pandemic

The voice of health consumers has been influential in shaping Queensland’s effective response to COVID-19. A number of elements have made this effective: The willingness of health consumers to share their experiences of the Queensland health system during the pandemic, strong advocacy  from the state peak consumer organisation Health Consumers Queensland (HCQ), responsive health leaders, and a State Government that has matched its valuing of consumer engagement with record levels of funding to HCQ.

Line in the sand

On 10 March 2020, at a large system-wide forum with representatives from Queensland’s Hospital and Health Services and Health Department, the Chief Health Officer Dr Jeanette Young gave a briefing about what was known about the new coronavirus, and flagged potential overwhelming of the system never seen in Queensland.

As HCQ’s CEO, myself and consumer Helen Mees were invited by Queensland Health’s Director General Dr John Wakefield to address the system. We identified the dire potential consequences of Queensland’s health system not engaging swiftly and meaningfully with consumers and the community (the results of this can be seen in outbreaks in other Australian states, and globally).  Our message was:

I’m here today, as we examine the question “are our hospitals prepared?” to sound a stern warning that the benefits of consumer partnerships haven’t even begun to be harnessed on this issue, certainly not in a structured systematized way. 

This is not how we are used to working.  For the last 2 months, as you have been preparing for community spread of COVID19, I (and many of you) feel like we’ve been in a strange parallel universe where we are used to our organisation and consumers being a valued and vital voice, brought in early, seen as protective, helpful, trusted to understand the grey, the uncertain.  To help guide the system response and messaging on important issues.

Together we’ve been on this [partnership] journey since at least 2012, when the National Standards came in.  That’s why this current approach feels so wrong to so many of us.

 I do understand that this is something of a magnitude that the system has never seen before.  I can see why a strong, central command and control approach might be seen as the best approach, perhaps all you have had capacity for.

But if nothing changes, if you continue to keep consumers at arms’ length, and there’s a look back, it will be found that the current approach to engagement was lacking.  And it will be found to have contributed to poorer outcomes.

Today is our opportunity to draw a line in the sand, to turn things around and start working in the way that we know we need to.

We also shared key messages from vulnerable consumers from across Queensland, who clearly stated they wanted to help shape Queensland’s response:

  • Have us at the table in the planning of emergency and ICU capacity planning.
  • Work with us to put together stigma and anti-hysteria campaigns.
  • If you’re going to put together online information on COVID in language you can understand, can you please ask Health Consumers Qld to run it by consumers before its published?
  • If you’re going to have meetings about how to communicate with the community about cancelling or delaying outpatient appointments and elective surgery, have us at the table to help you.
  • If you’re working on locally led messaging, please work with your engaged consumers and community partners locally.

As Andrea, a disability advocate said, it was people with disability who were most vulnerable to COVID but had neither the money nor the carers and were forgotten in lockdown and they should be invited to the table to give information.  “So I think it is absolutely wrong that we are not invited to the table.”

HCQ pivots and the Queensland health system re-commits to partnering

A week later, Health Consumers Queensland shifted to working from home and pivoted our work to support consumers and the health system to collaborate on solutions to challenges not seen before.

Over the ensuing months, we sought and accepted opportunities to now have consumer representatives and HCQ organisational representatives at almost every level of the public health system’s response the pandemic, including key departmental committees and working groups focused on emergency/ICU/surgical/outpatient planning, testing frameworks and implementation plans, COVID positive models of care and more.

HCQ’s rapid and frequent online engagement mechanisms have meant that Queensland Health has been able to hear from hundreds of Queenslanders with significant health needs and use that intelligence to form a more wide-reaching response than otherwise possible.  These included 35 HCQ COVID-19 Consumer Community of Interest Consumer Conversations with more than 500+ consumers.

Topics included:

– Consumers delaying healthcare

– Priority consumers and carers at risk of being left behind

– A mental health system for everyone: Integrated, strong and tailored to our individual needs and circumstances

– Qld Health funding priorities including consumer insights about telehealth and virtual care

– Positives and innovations consumers want to retain after COVID-19

– Consumer engagement in Victoria and NSW: Lessons learned during COVID-19

– Consumer experiences of health services as COVID-19 restrictions ease

– COVID-19 vaccine: Health consumers’ views

– Encouraging COVID-19 testing throughout Queensland

– Face masks: What more consumers needed to know

– Culturally and linguistically diverse consumers needs during COVID-19

By circulating Issues Papers to key system decision makers, publishing them on our website and proactively seeking consultation/partnership opportunities, HCQ has been able to track and instigate change on issues the group has raised.

Bespoke consumer consultations for Queensland Health

To further facilitate consumer involvement in key decision making around COVID-19, Health Consumers Queensland has supported consumers being involved in 22 rapid consultations since March (involving more than 120 consumers) for Queensland Health projects and initiatives including:

  • First Nations and rural and remote consumers
  • Funding priorities and models
  • Community media/communications campaigns including for culturally and linguistically diverse consumers, Queenslanders generally and around a mental health and wellbeing campaign.
  • Reviewing form letters and SMS messages to patients when elective surgery was delayed, and then again, when reinstated
  • COVID treatment options
  • Border exemption processes

Kitchen Table Conversations

We also successfully converted the Kitchen Table Discussion methodology to work on-line

(rather than face-to-face). Eleven (11) community hosts conducted kitchen table discussions with 69

participants during COVID-19 to hear the voice of the wider community in relation to learning what

level of communication they would expect from Queensland Health during the pandemic and what they would expect as patient centred care.

Regular meetings with consumer representatives, NGOs and consumer peaks

We facilitated multiple opportunities to hear from Statewide HHS Consumer Advisory Group leaders, Statewide Clinical Networks consumer representatives, Queensland’s Primary Health Networks consumer representatives, consumer members of the Health Consumers Collaborative of Queensland and HCQ’s own Consumer Advisory Group.

HCQ coordinated weekly meetings with fellow consumer organisations Queenslanders with Disability Network (QDN), Palliative Care Queensland, COTA Queensland, ADA and the Queensland Clinical Senate. We also met regularly with our fellow state health consumer organisations, supporting Health Issues Centre led consumer forums.

COVID-19 Resource Development

Online Training

  • Health Consumers Queensland’s pilot of Project ECHO training for consumers was adjusted to be COVID-19 responsive – we were the first in the Asia-Pacific region to deliver this training from our homes and the first in the world to use Project ECHO to build skills in consumer engagement.
  • HCQ moved all staff training online with the creation of lunchtime Snackpack training sessions for health staff and instigated a Project ECHO for HHS Engagement staff. 

For full details of HCQ’s response to COVID-19 go to:

As Steven Miles, Deputy Premier, Minister for Health, Minister for Ambulance Services, said recently in thanking HCQ:  “The COVID-19 pandemic has again demonstrated why genuine consumer engagement and co-design is so valuable to our health system and to all Queenslanders.”

To health consumer organisations around the country and consumers in their networks, we hope HCQ’s experience can provide a window into the benefits of partnering openly and meaningfully with the community.  Now, more than ever – nothing about us, without us.

About the author

Portrait of Melissa FoxMelissa Fox is Chief Executive Officer of Health Consumers Queensland, Chair of the Australian Commission on Safety and Quality’s Partnering with Consumers Committee and Vice President of the Queensland Council for LGBTI Health. She sits on the Queensland Health Leadership Board and is an independent member of the Reform Planning Group established to advise the Queensland Government on how best to harness the opportunities arising from the COVID-19 pandemic response to support the best possible health and healthcare for Queenslanders.