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eAlert: Enabling vital partnerships to ensure the COVID-19 health response meets the needs of all Queenslanders

In this issue:

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?
Some of the consumers have continued to receive health care or have required urgent care throughout the pandemic either in hospital settings or remotely via telehealth. Others have made informed decisions about deferring care even if they require regular monitoring and check-ups. Some have had no contact from hospital departments to address overdue appointments and make alternative arrangements.

From our first conversation this week with the COVID-19 Community of Interest, a picture started to emerge of mixed messaging, inconsistent application of protective and safety measures and varying levels of confidence in the public health system’s ability to keep patients safe from potential infection.
 

People feel frightened, vulnerable and forgotten

Many consumers have health conditions or illnesses which have required them to take the lockdown measures very seriously. They do not feel confident going out in public let alone going to hospitals.  “I don’t think people understand the fear that we are experiencing, the precautions we are taking and that our fear is going to last a lot longer than the general population.”

The unease about going to hospitals in part stems from the casual interpretation of social distancing rules they are now witnessing in public places and a lack of certainty that hospitals will be any different.  “It is chaotic out there. Now people think it is ok but the danger has not passed. We’ve just flattened the curve.”

One consumer added that the communications from Queensland Health had left her feeling vulnerable and forgotten and that reassurance for "those of us who need specialists would be helpful."
 

Patients are experiencing different levels of protection and safety even within the same hospital

Patient observations of protective and safety measures have differed even within the same hospital. One patient commented, “how well things are organized and social isolation” whilst another shared this experience: “I must have seen 40-50 people working on the ward – registrars, staff, cleaners etc but I don’t think I saw a mask at all. The ward I was in had older persons in and two of them had ongoing cancer issues but I didn’t see any particular precautions being taken. I didn’t feel unsafe but your mind does dwell on ‘what if’ and how readily some spread could happen in some of these busy wards.”

Another consumer summed it up saying, “It seems there is a lot of variation in the approach to COVID-19 and what has been put in place to enable patients to access care that makes them feel safe between hospital services. While we know these types of inequities are common, shouldn’t there be more consistent approaches across centres in relation to COVID-19.?”

Informed decision-making and risk management is left to patients

In the absence of clear or tailored information or contact from clinicians, some patients and carers have been assessing risk and making informed decisions about whether or not to continue with health care during the pandemic.

 “I have needed to see a couple of specialists – cardiac, endocrinologist, thoracic as well as oncologist during these last couple of months but haven’t seen any. It’s too hard to see the GP for a physical and feel safe and have your needs met.”

 “You’ve got to measure up what is happening with the risk you run. You run the risk in some pharmacies or supermarkets. Hospitals are higher.”

“We’re taking information from multiple sources: state and federal governments, parents and clinical groups. We don’t make decisions until the day before or morning of because things are changing all the time. When you are being monitored for cancer it is pretty important to get regular monitoring. Some of that is our decision but the hospital hasn’t offered any telehealth or rung to say you’re overdue, do you want to come in?”

Quality and clarity of public messaging

Part of the uncertainty, confusion and reticence comes from unclear or contradictory messaging and the overwhelm of COVID-19 on television and social media. Consumers would like a short, sharp, daily briefing from Queensland Health (e.g. five minutes). They would like to know they could tune in at the same time each day (TV or Facebook) and be told any new, important information that would guide their decision-making about accessing care and moving about in the community. 
 
View Queensland Health's Hospitals are Safe video
Latest news

The power of the Consumer Conversation


It is hard to believe that we have only been holding our Consumer Conversations for the past eight weeks. Yet last week we were delighted to hear how much these conversations mean to you in your roles as consumers and how you hope they will continue beyond COVID-19.

We have seen how these conversations have connected consumers with each other as never before. In this spirit of togetherness, you have supported, informed and empowered each other. Some of you are continuing to work on the issues raised within your consumer representative roles in hospitals and health services and in your own workplaces.

We have now held 15 Consumer Conversations with our new COVID-19 Community of Interest group and members from our own Consumer Advisory Group, the Health Consumer Collaborative of Queensland and HHS CAG Leaders. Two weeks ago we started a new conversation with consumer representatives from PHNs and three weeks ago we welcomed consumers from the Statewide Clinical Networks across Queensland to their own conversation.

Each group is diverse and each conversation is different and all your input has been invaluable as you’ve framed and shared your diverse experiences, concerns, observations and recommendations to give unique perspectives in relation to Queensland Health’s response to COVID-19.

As the weeks have gone by, you have kept telling us what is going on for you and what the Department’s response means to you. You’ve helped us identify key issues for Queensland Health often even before they have been aware themselves. In fact, as one Deputy Director-General noted: we are always a step ahead.

It has been our job to make sure your voices are amplified right through the system. We can do this because we sit on key strategic panels and committees (including the Public Health Response Implementation Advisory Group, the Queensland Clinical Senate and the Queensland Health Leadership Board) and we are able to distribute your contributions to inform and influence decision makers at the highest level. 
 

Telehealth and the COVIDSafe contact tracing app – state health consumer peaks forum


The peak health consumer bodies across all the states and territories support each other and work together to empower and inform consumers, and ensure their voices are amplified across respective health systems. We meet once a week by Zoom and during the pandemic we have supported each other as we led a community call for a nation-wide lockdown.

We have shared and adapted new COVID-19 resources and last week we jointly hosted a national community forum on two key consumer services: telehealth and the COVIDSafe app. If you missed the event, you can view the video from the forum or you can read this blog post  from the Health Issues Centre in Victoria which includes a comprehensive round up of the presentations and the issues discussed.
 
Reporting back to consumers and carers

Financial conflicts of interest in health care: research published in BMJ

Some of you may remember participating in a research workshop in Brisbane two years ago with Dr Ray Moynihan from Bond University about financial conflicts of interest in health care, transparency databases which disclose industry payments in the USA and Australia and the pros and cons of advocacy groups accepting industry sponsorship.

His research paper has recently been published in the BMJ and his findings stated that consumers expressed strong support for tough transparency rules and mixed feelings about advocacy groups accepting sponsorship from industry.
 
COVID-19 information and resources for consumers, carers and engagement staff 

*UPDATED on 14 May 2020* Health Consumers Queensland COVIDSafe tracing app decision guide and FAQs


Is the COVIDSafe tracing app right for you and your family? 


If you're uncertain about downloading the new national COVIDSafe tracing app, open our regularly updated COVIDSafe tracing app decision guide and FAQS which sets out the benefits, risks and alternatives.

We are continually reviewing the information in the guide and FAQs and updating this each week. You can download the latest version from our website using the links below to help you decide the best course of action for you and your family. The latest update includes most recent download numbers, links to source code released, agreement from State and Territory health authorities to use the app data, and some additional user issues.
 
View COVIDSafe tracing app decision guide and FAQs

Boost your Healthy (during COVID-19) is now live


Back in April, consumers worked with Health and Wellbeing Queensland to provide feedback on a new web platform to support people's physical and mental wellbeing during the pandemic. Consumers recommended that the platform needed to be more accessible and relevant to all Queenslanders and Health and Wellbeing Queensland have acted upon your valuable input.
 
If you're looking for support, inspiration and ideas to stay healthy and active at home during COVID-19 you can Boost your Healthy by clicking on the link below.
Go to Boost your Healthy

Join our state-wide COVID-19 Community of Interest

It has never been more important to listen to the voices of carers and consumers. Find out more about our state-wide COVID-19 Community of Interest and take part in weekly video conversations to inform Queensland Health's pandemic response. 

Please register your details  via the link below. 

COVID-19 Community of Interest
Opportunities for consumers and carers from Health Consumers Queensland

Host an online community discussion about palliative care services and resources in the Brisbane South PHN region


Health Consumers Queensland has an opportunity for three consumers or carers in the Brisbane South PHN region to facilitate consultation with local community members to understand what palliative care services and resources are available in community and if they are meeting their needs.

This will assist BSPHN and Palliative Care Queensland in determining if a palliative care telephone and support line would be of value for people who are over 65 with a terminal condition, and
their families.
 

As the host, your role will be to plan, coordinate and facilitate a once-only 90 minute discussion online via Zoom or Skype with up to six community members between 28 May and 10 June 2020.
 

We would like our hosts to have personal experience or an interest in Palliative Care and have strong community connections. We are also interested in representing the views of a range of consumers who may not typically have a say in healthcare.
 

Find out more about the project, the role, training and remuneration and complete an application by clicking on the link below. The closing date is 22 May 2020.

Find out more and apply
Other opportunities for consumers and carers

Help researchers understand consumer and care perspectives about palliative care and medication use

The aim of the survey is to better understand any of the barriers and facilitators to deprescribing for patients with life-limiting condition or illness and to enable the development of appropriate tools to assist health professionals and patients to work together to optimise medications.

To take part, please click on the link below or download the information sheet here.

UQ survey on palliative care and medication use

Participate in a research project about My Health Record


A post-graduate student at JCU is conducting research about My Health Record. She would like to hear from you if…

  • You live in regional or rural Queensland
  • You are regularly seeing your GP, nurse, diabetes educator or other health professional.

She would like to hear about your experiences of the My Health Record during your consultations, or when looking at your own records. She would also like to hear from people who may have used it or have experience of it previously.

To participate in the research, she would like to do a short interview with you.

The questions can be asked over the phone or via internet video link at a time convenient to you. The interview will take approximately 60 minutes. 

If you are interested and would like to know more please email amanda.baron@my.jcu.edu.au or call  07 4781 4308.  

Closing date: 30 June 2020
 
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