Consumer Conversations are impetus for major new national research study

Health Consumers Queensland is partnering with Griffith University in a new national consumer-led research study looking at people’s attitudes and resulting behaviours to the government’s containment measures imposed from the onset of the COVID-19 pandemic in Australia. Take part in the survey now.

Dr Joan Carlini, who is leading the study, is a Lecturer in Marketing and Discipline Leader at Griffith Business School specialising in the intersection of business, government and society with a particular focus on consumer behaviour. She is also Chair of the Gold Coast Hospital and Health Service Consumer Advisory Group and a long-standing member of Health Consumers Queensland’s state-wide consumer network.

She said, “This is a unique study because it has been guided by Health Consumers Queensland’s Consumer Conversations. In fact, the story behind this research is as powerful as the research itself. I have been attending Health Consumers Queensland’s weekly COVID-19 Consumer Conversations since the start (wearing my non-expert health consumer hat) and I was struck by the diversity of views and experiences that were shared in this forum. They gave me an insight into what people from all walks of life were grappling with as restrictions tightened. I also realised that there was a huge gap between what was being said by health consumers and what I was hearing on mainstream media and academic forums I’ve also been attending.

The circumstances of this particular pandemic are unprecedented and this project offers researchers a rare opportunity to survey a vast cross-section of people across Australia and seek to understand a person’s individual circumstances and their sense of personal threat of COVID-19, and link it to their actual behaviours.”
Joan has assembled a research team which includes experts from infection diseases, social marketing, consumer behaviour and health consumer engagement to tackle this lack of access to ‘’hard to reach’’ voices which is a substantial concern for public health. It is hoped that the research will:

  • provide an explanatory framework for current individual behaviours and influencers
  •  identify groups of people who have found it difficult to comply with current restrictions thus enabling information, influencers and communications to more effectively target these audiences
  • provide policy makers with evidence for future decisions about reducing transmission during a pandemic.

Melissa Fox, CEO of Health Consumers Queensland said, “This project is a unique example of consumer-led and co-produced research.  Through our COVID-19 Consumer Conversations, the consumer input and lived experience expertise has laid the foundation for a new way of thinking about this pandemic. We’re delighted to partner with Joan and Griffith University to ensure that the most vulnerable members of our society are supported and protected as we all continue to respond to COVID-19, and plan the response to future pandemics.

This project is about finding patterns across society and its success depends on large numbers of people across all communities in Australia taking part.

Thank you for finding 20 minutes to fill in the survey and please do share it with your networks, family, friends and colleagues.”

Over 80 consumers partner with clinicians and other stakeholders to develop a Framework for Ethical Decision-Making

In March this year with the onset of COVID-19, the Queensland Clinical Senate and Queensland Clinical Networks, along with ethicists and other health professionals, began work on developing a framework that would advise care decisions if we were in pandemic and hospital resources and intensive care beds were impacted.

In the early stages of the work, Health Consumers Queensland was approached to support the development of the framework.  From that point on consumers were involved and consulted at every stage.  Engagement Advisor, Leonie Sanderson also consulted with current and past members of the Queensland Health Consumers Collaborative and HCQ Consumer Advisory Group on the framework values and principles whilst  Anne Curtis, Engagement Consultant, Special Projects, undertook rapid consultation with the broader community to hear what was important to them if we were in a pandemic situation. In all, more than 80 consumers and community members informed the framework.

The Queensland Ethical Decision-Making Framework is the result of a partnership between clinicians, consumers and other stakeholders, and was the first framework in Australia to be developed with consumers.  The framework and the supporting consumer resources are located on the Queensland Health website:

The three documents can be found under the section heading:

Statements, guidelines and directions from professional groups
Queensland ethical framework to guide clinical decision making in the COVID-19 pandemic (PDF 1269 kB)
Queensland ethical decision-making framework – Frequently asked questions (PDF 309 kB)
Shared decision making in Hospital Intensive Care Units during COVID-19 (PDF 2160 kB)

Six of the participating consumers have also worked on the development of consumer resources to ensure consumers and the community understand the purpose of the framework if it is required to be actioned. A shared decision-making infographic and Frequently Asked Questions now sit under the Framework on the Queensland Health website. 

We would like to acknowledge Lis Miller, Keren Pointon, Hamza Vayani, Sharon Boyce, Satrio Nindyo Istiko and Tanya Kretschmann, Helen Mees, Phil Carswell, Martin Chambers, Adele Witte, Lila Pratap, Jim Madden and Delphine Geia for their involvement with the development of the framework and the supporting consumer and clinician resources. 

Consumer themes through COVID-19

Health Consumers Queensland has been facilitating Consumer Conversations since 25 March to hear directly from consumers during COVID-19. Since then we have held 26 sessions with more than 500 consumers. The early conversations were during a lot of uncertainty as public health restrictions were being imposed and we simply asked “what is working, what isn’t and what are you concerned about?” As the curve began to flatten, we refined the conversations to focus on specific topics, based on what we were hearing from consumers. Consumers routinely identified early key issues for the community, which we were able to feed through to the health system. This enabled the system to respond in the knowledge of consumer insights and expectations.

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A mental health care system for everyone

COVID-19 has shone a spotlight on mental health service provision in Queensland like never before, as people grapple with prolonged social isolation, fear and uncertainty, unemployment, restricted access to health care, home-schooling, withdrawal of support and services, and many reporting feeling forgotten by the government and its pandemic responses.

Currently Queensland Health provides mostly acute mental health care services but some consumers consider the scale of the mental health crisis facing the public health system is “another pandemic in itself”.

In every single one of the 24 Consumer conversations we have hosted since March, over 400 consumers have shared their concerns about people’s mental health at this time.

In this week’s Consumer Conversations we asked:

  • What have you learned about the current mental health system during COVID-19?
  • What do you think is working? 
  • What do you think could be improved?

They told us that a prescriptive, inflexible and reactive approach to mental health care is not working – or helping. Consumers want tailored, individualised care and communication and a system which prioritises and values preventative mental health care measures.

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Consumers and clinicians share a healthy appetite for major change

This week we hosted two Consumer Conversations to seek the consumer view of what Queensland Health’s Funding Priorities should be for 2020/2021.  In all, 42 consumers were involved from our our COVID-19 Community of Interest Group, members of the Health Consumers Collaborative of Queensland and our own Consumer Advisory Group (CAG) as well as HHS CAG Leaders and consumer representatives from some of the Statewide Clinical Network Steering Committees.

While talking about the proposed priorities for the next financial year, it was clear that health consumers are ready for some major changes in health. The recent Queensland Clinical Senate meeting also demonstrated a parallel appetite for change by clinicians in the health system too.

Consumers identified major reforms to long-held traditions and ways of addressing health care including:

  • the way patients are categorized for care (not just triaged by clinical need/clinically appropriate wait times, but in the context of complexities in their lives)
  • re-imagining HHS borders to better reflect referral pathways that work for consumers
  • the way healthcare is funded (outcomes, rather than volume)
  • collaborating with consumers to design new models of care, service improvements and funding models as well as when providing them with individual care
  • actively addressing the social and cultural determinants of health and the systems barriers that keep some people in a cycle of poverty and ill-health.

Above all, consumers want fair, equitable and maximum access to health care services for every Queenslander.

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As Queensland looks forward, who is being left behind?

At the Queensland Clinical Senate meeting on Monday, clinicians and consumers from across the state examined the innovations and improved models of care which have come out of the response to COVID-19, and made recommendations about what should be kept and developed beyond this pandemic.

As the public health system starts to look forward, Health Consumers Queensland has also been continuing to talk with consumers this week about who is being left behind.

The COVID-19 pandemic has highlighted inequalities, inequities and discrimination in the healthcare system and our daily lives so we asked our COVID-19 Community of Interest Group, members of the Health Consumers Collaborative of Queensland and our own Consumer Advisory Group (CAG) as well as HHS CAG Leaders and Engagement Advisers:

  • Who is being left behind?
  • Why are they being left behind?
  • What can the system do and what can consumers do to address some of these issues?

Whilst many Queenslanders are now starting to enjoy life with some recent relaxations to restrictions, consumers and advisers identified over 25 groups of people whose health and/or social circumstances mean they are still unable to leave their homes or are particularly vulnerable to infection and the effects of prolonged isolation.

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Does health care feel safe right now?

Queensland Health has just released two new videos and key messaging, which consumers and the team here recently reviewed, to reassure the public that hospitals are open and ready to provide safe and essential care. Their release comes after staff raised concerns about patients not attending scheduled appointments or going to hospital when they are very unwell or in need of urgent care.

Experienced consumers had already highlighted the lack of information for consumers about what hospitals were doing to make them feel safe. Good communication prior to a visit is important. Once there, consumers then feel more comfortable about the practices in place to ensure their safety. It is encouraging to see that the videos have incorporated this feedback and acknowledge the confusion caused by the changes in public messages.

In order to assist Queensland Health to deepen its understanding of what matters to patients and continue to build renewed trust and confidence, this week we asked our COVID-19 Community of Interest, CAG Leaders, members of the Health Consumers Collaborative of Queensland and our own Consumer Advisory Group if healthcare feels safe to them right now in public hospitals and health service settings. Specifically:

    • Are measures such as PPE and distancing enough to make you feel protected? Are they being used adequately in healthcare you have experienced recently?
    • Are distancing guidelines being followed by others, or being enforced by the healthcare service?
    • After being in lockdown for weeks, do you feel confident to go out in public to seek healthcare?

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A Change for the Better?

The way we receive and experience health care has changed so quickly during the past few months. As with any situation, both challenges and opportunities have come from living through a global pandemic. While the negatives are easy to identify, we have also seen Queensland Health: ​

  • Involve consumers in new and innovative ways ​
  • Quickly implement new models of care​ such as widespread access to telehealth and hospital in the home
  • Reduce care that is of low benefit ​
  • Roll out changes that have been long suggested but have not previously gained traction ​
  • Achieve greater efficiency and effectiveness of established care models. ​

Meanwhile, here at Health Consumers Queensland, we are connecting and consulting directly with consumers far more than we ever have, in newly adopted ways, and we’ve been able to amplify your voices with greater impact, urgency and meaning than ever before.

And what do consumers think? As the Queensland Clinical Senate gears up to meet with its clinicians on 18 May to explore the innovative practices in health care which have been developed during COVID-19, Health Consumers Queensland has embraced the opportunity this week to ask our consumer groups to reflect on what the public health system’s response has meant to them.

Continue reading eAlert >