The challenges for Health Consumers Queensland and Queensland Health mean we need to work closely together to ensure consumers are brought in at the right time to influence plans, and public-facing communications and directives.
Here we update you on the latest work with consumers and staff and share how consumer input is impacting how Queensland Health is supporting and informing Queenslanders around COVID-19.
Join the COVID-19 Community of Interest
Health Consumers Queensland has been having regular video-based Consumer Conversations about the Queensland public health system’s response to COVID-19 with groups of health consumers and carers across the state. To take part in these Conversations, join our COVID-19 Community of Interest
Queensland’s best defences against a sustained outbreak of COVID-19 via community transmission are quarantine, border controls, testing and contact tracing.
Ahead of reports of new cases of COVID-19 in Brisbane this week, 21 consumers had already joined forces with Department and health staff, Queenslanders with Disability Network and Palliative Care Queensland at a Consumer Conversation on Tuesday to share their views on the top barriers to testing and what can be done to address these and encourage more people to get tested.
During the conversation, it was clear that consumers are looking for a clear and unambiguous testing pathway which is convenient, supportive, nuanced and needs-focused. Yet fear, uncertainty, confusion, misinterpretation and complacency are rife.
Specifically, consumers identified the following ongoing barriers to testing:
- Difficulty interpreting advice about symptoms
- Unclear testing pathways
- The logistics of having a test and managing the consequences are too complicated and overwhelming
- The need to self-isolate (for several days in rural areas) while awaiting results
- Pain and trauma associated with testing
- Perceived lack of social responsibility amongst certain groups of people
- Fear of stigma and retribution if people do test positive
New grant funding underpins our consumer-focused COVID-19 initiatives
Health Consumers Queensland has been successful in securing grant funding from Queensland Health to support our continued COVID-19 service provision. As one of more than 130 community-based health service groups across Queensland sharing in more than $30 million, the grant will help Health Consumers Queensland to continue the delivery of a number of consumer-focused initiatives.
This additional funding will support:
- continued consultation with consumers on planning for continued and future pandemic situations
- a new project to engage with young health consumers about their experiences during COVID-19 pandemic (check out the
- opportunity to join our Youth Reference Group in this eAlert)
- evaluation of the strong engagement approach taken by Health Consumers Queensland and Queensland Health during COVID-19.
We are so pleased to be able to continue to support the vital voice of consumers during this time.
Consumer Conversations are back and they’re better than ever!
Consumer Conversations have made a welcome return this week and it was wonderful to see you all again on Zoom on Tuesday.
For this series, we have brought together our experienced and emerging consumer groups so the COVID-19 Community of Interest has joined up with the Health Consumers Queensland’s Consumer Advisory Group, the Health Consumers Collaborative of Queensland, the Primary Health Networks and the consumers who sit on Statewide Clinical Networks.
Conversations will now be held every fortnight rather than once a week.
These valuable sessions will continue to provide consumers the opportunity to share your lived experience on topical health issues with the group and with Queensland Health. In response to your helpful feedback, we’ve also added a short informative presentation at the beginning of each session to enable you to build your skills and knowledge around consumer engagement.
This week we explored: How to tell your story with impact. Many people become active as health consumers due to a significant experience with the health system. Telling the story of your healthcare journey effectively can be a powerful tool in your consumer kit.
We hope you enjoy this new format and please continue to share your feedback with us as the series continues.
If you’d like to join the Consumer Conversations, please register here. The next presentation will focus on some tips and strategies that help to communicate your message with impact.
As we mentioned in last week’s eAlert, in the most recent Consumer Conversation we asked consumers for their reaction to the COVID-19 response from Queensland Health, and from us, Health Consumers Queensland. We were very pleased to hear that consumers were satisfied with Queensland Health’s response. Particularly compared to other states, consumers felt that Queensland Health has done very well to involve consumers to such a high degree, to listen and act on their views and concerns. Suggestions for improvement included greater attention to the needs of vulnerable groups, greater reach into the regions, and better communication and especially with culturally and linguistically diverse people and communities.
Consumers were overwhelmingly positive about the COVID-19 response from Health Consumers Queensland, with many feeling that the COVID-19 Community of Interest gave consumers the opportunity to have their voices heard, and gave them the information they needed to support themselves, their families and their communities. Importantly, consumers saw the influence they had on Queensland Health and were mindful of how unique that is in Australia.
By acting swiftly at the onset of COVID-19, Health Consumers Queensland was able to pivot our work to support consumers and the health system to collaborate on solutions to challenges not seen before. This early action has played a key role in ensuring a consumer-centred public health system response to COVID-19.
Through our work, 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. You can read the big picture summary of our collaboration here.
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. You can read the full summary of all the themes covered by consumers during this time here.
You can also read the full summary of consumers’ reflections on the response to the pandemic, including how both Queensland Health and this organisation can continue to improve, in our latest Issues Paper.
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: https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/novel-coronavirus-qld-clinicians/resources-for-clinicians
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.
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.
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.
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.