Sharing your experience helps us see the whole picture
We’re feeling reinvigorated this week, having attended and participated in several online conferences and events that really spoke to the importance of consumer engagement in health.
At the Consumers Health Forum online summit, Shifting Gears, consumers and other leaders from the health sector explored the latest research and developments driving health towards a consumer-centered culture.
Our Deputy Director, Clare Mullen, spoke about Consumers Shaping Health Policy through the WA Healthy Weight Action Plan. The Action Plan and its implementation has a strong focus on consumer involvement and reaching diverse groups, and Clare’s presentation explored the collaborative approach across community, government and primary care boundaries to address complex health issues takes investment of time, resources, and goodwill.
On the second day of the conference I took part in a panel discussion on consumer leadership, where I spoke on the importance of having the consumer voice involved at all stages, across all levels. If the consumer voice isn’t at the table then whatever you end up isn’t going to have the same impact.
I wanted to share the advice I gave in this session, as it applies equally to not just consumer, carer, family and community representatives, but anyone helping to create change in the health system – your passion of lived experience is an inexhaustible fuel and that is a wonderful thing. But it’s OK to step out of the dance when you need to, and step back in when you’re ready. This work can be really challenging, and we are playing the forever game of health, so don’t forget to look after yourself.
We’re excited to keep the celebrations going with the Health Consumer Excellence Awards on 29 April. As part of Patient Experience Week, we’ll be recognising the everyday heroes in health, from our consumer carer and community advocates to our clinicians and caregivers. Join us for a relaxed evening celebrating the vision for a kinder, safer health system – further details are below.
Pip Brennan, Executive Director
Want to get involved?
Nothing about us, without us is a catchcry that emerged from disability advocates and has been embraced by consumer, carer, family and community representatives to highlight that “no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy”.
Your voice and your experiences are important and can help shape what health service in WA looks like. Want to get involved?
The Australian Government has released its plan for providing the COVID-19 vaccine free for everyone in Australia, including all Australian citizens, permanent residents, and temporary visa holders.
People who have had an allergic reaction or a severe allergic reaction (anaphylaxis) to any ingredients contained in the COVID-19 vaccines should avoid the specific COVID-19 vaccine(s) that contain those ingredients. Talk to your healthcare team if you have had an allergic reaction or anaphylaxis to any medication (including chemotherapy) in the past.
It’s important to be aware of misinformation and stay up to date using reliable sources only. If you can’t find the information you need online, we encourage you to speak to your GP.
The ingredients for each of the COVID-19 vaccines can be found in the ‘Product details’ section of their ‘Consumer Medicines Information’ leaflet, available on the TGA website:
- Click here for the Pfizer/BioNTech (Cominarty) Consumer Medicines Information leaflet
- Click here for the University of Oxford/AstraZeneca Consumer Medicines Information leaflet
2021 Health Consumer Excellence Awards
Join us during Patient Experience Week as we celebrate the everyday heroes in health, from our consumer carer and community advocates to our clinicians and caregivers.
This will be a relaxed evening bringing together consumers and health professionals to acknowledge and celebrate the actions and people who contribute to a positive experience for patients, clients and consumers
As well as announcing the award winners, we'll be sharing on the night some real experiences of kindness, connection and community - and being seen as a whole person – in health services.
When: Thursday 29 April, 4.30pm-6:30pm
Where: The Platform Perth
Community Conversation – draft National Preventative Health Strategy
We’re holding an online community conversation to discuss the draft National Preventative Health Strategy.
When: Mon, 29 March 2021
Time: 10:00 AM – 11:30 AM AWST
Where: Online via Zoom.
Register at https://www.eventbrite.com.au/e/public-consultation-draft-national-preventative-health-strategy-tickets-145589029707
The Strategy presents a powerful opportunity for Australia to build a sustainable prevention system for the future. The Strategy aims to address the increasing burden of disease, reducing health inequity and increasing preparedness for emerging health threats. The draft version is open for feedback until Monday, 19 April 2021.
The feedback received from this public consultation will assist the National Preventive Health Taskforce in finalising the Strategy, which is anticipated to launch in mid-2021.
We welcome you to join us online for a discussion about the Strategy and give some valuable feedback as we ensure that a wide-range of views and perspectives are heard. You can read the draft Strategy here.
A call out for young people and family perspectives on weight
As part of our work with the Healthy Weight Action Plan, we want to make sure that health services in WA for children, young people and families around overweight and health are developed based on a really good understanding of people's firsthand experiences.
If you or anyone you know has any input you'd like to share – either as a parent, or as someone who has firsthand experience of overweight issues as a child or young person – we would be very interested in hearing from you.
If you'd be up for a telephone or Zoom interview, we can offer a consumer participation payment to acknowledge your input and expertise. We will write up the notes from the conversation and send them to you so you can see what we’ve recorded. You won’t be identified when we share your experiences - unless you want to be.
If you would rather share your experiences in writing, you can do so using this survey by 30 March.
To book in a time to have a conversation with us, or just to find out more, please contact email@example.com or 9221 3422.
Help shape a Consumer Charter focused on digital health
WA Health Consumer Charter – Digital Health Focus Reference Group
We’re working with the WA Department of Health to develop a Consumer Charter which focuses on digital health. We will be engaging in a wider-community consultation to guide the Charter content and are seeking Reference Group members to guide and shape this wider consultation.
We are seeking a diverse, inclusive group and aim to include people who identify as Aboriginal/Torres Strait Islanders, Culturally and Linguistically Diverse, LGBTQI+, people with disabilities, and young people.
We are looking for members with one or more of the following:
• Willingness to provide advice and guidance from a broad consumer focus as well as from own individual personal perspective
• An interest in Digital Health
• An understanding of WA Health Hospital Systems
• Confidence in communicating with health professionals and administrators
This Reference Group will meet weekly from April 6 – May 17. A sitting fee will be paid.
Find out more and apply at: https://www.hconc.org.au/wa-health-consumer-charter-digital-health-focus-reference-group/
Applications close 31 March
Seeking Kitchen Table Hosts – Digital Health
Would you like to host an informal engagement session with your local community to talk about the principles we expect to be upheld around digital health?
Kitchen Table Discussions are community engagement sessions led by local people for local people.
They allow individuals and small groups to participate in discussions at a time of day, and in a place, that suits them. The discussions enable health consumers, carers and community members who do not ordinarily participate in healthcare consultation to have their say in a safe and supportive environment.
The hosts will plan, coordinate and facilitate a once-only 90 minute discussion with up to 10 community members.
The feedback gathered from the discussions will be used to form a Consumer Charter, under work we’re doing with the WA Department of Health focused on digital health.
Who are we looking for as Discussion hosts?
We would like our Discussion Hosts to have personal experience with or an interest in digital health care. We are also interested in representing the views of a range of consumers who may not typically have a say in healthcare. To achieve this, we are particularly looking for hosts who are consumers and/or carers and can demonstrate they have strong links with their communities.
Hosts will be remunerated for this role, and participants will be offered a gift voucher for their time.
For more information visit https://www.hconc.org.au/kitchen-table-host-wa-digital-health-focus-consumer-charter/
To apply as a host, please fill out the survey at https://www.surveymonkey.com/r/KTDConsChart
For queries relating to this opportunity, please email Kieran Bindahneem, Project Coordinator at firstname.lastname@example.org
Applications close 15 April
Weighing in on Weight Talk
For all sorts of reasons, talking about weight, overweight and health can be a sensitive and difficult subject for some people.
We recognise that some people aren’t interested in talking about weight with health professionals. But for those who are, we want to help make these conversations safe, empathetic and helpful, so that you get the right information and support for you.
As part of our work with the Healthy Weight Action Plan, we’re developing a set of guidelines for health services on engaging with people with overweight and obesity.
The first step is to hear from people with firsthand experience of overweight and obesity about the ways you would like to be approached about weight by health professionals and engage in weight-related health activities.
How have you been approached about your weight and health in the past? How would you like to be approached about your weight and health going forward? We want to hear about what works, and what doesn’t, so we can increase health outcomes for everyone. Your personal story is really important to us.
You can share your experiences with us via this link.
The feedback you provide will be anonymous and your experiences will not be identified.
If you have any questions you’re welcome to contact email@example.com
World Obesity Day 2021
On 4 March we took part in the national online World Obesity Day 2021 event held by The Obesity Collective. It featured 17 rapid-fire presentations from experts around the world, with a strong focus on the need to end weight stigma.
Our Deputy Director Clare Mullen talked about involving people with lived experience during service design, and Andrew Wilson from Weight Issues Network spoke about how there is no one-size-fits-all approach to healthy weight. That’s just one of the reasons we want to hear from you in our work developing guidelines for clinicians on how to talk about weight.
Some notable quotes we loved:
“Obesity is not an individual issue...it's a complex issue but we can’t put it in the too hard basket. Small steps we take now to address obesity can have a large impact over time."
“We need to focus on prevention as well as treatment…it is a complex issue and there is no one solution…”
We loved the diverse discussions ranging from food poverty to advertising, stigma, chronic disease, consumer involvement, maternity, sustainability, eating disorders and so much more! If you missed the event, you can access all the presentations online here or watch HCC's Clare Mullen's presentation here.
Health Engagement Network - connecting consumer, carer, community and family representatives
We regularly hear from people who are involved in consumer, carer, family or community representative roles how much they value meeting other people in similar roles, and finding out what is going on in other parts of the health system.
Health Consumers' Council hosts regular networking sessions for anyone in a consumer, family, carer or community representative in the health system in WA.
At our recent online consumer rep networking event, we heard people say it would be valuable to be able to connect with other reps between events.
You said and we listened!
We are going to be trialling using the online Health Engagement Network (HEN) as a platform to enable consumer reps to connect with each other.
In response to the suggestions about creating a way for consumer reps to connect, we're going to trial setting up a group within HEN just for consumer, carer, community and family reps - or people who want to be one.
Initially, it might look like there's not much content in the group - but join in and let's chat!
The Network uses the Mighty Networks platform – it's like a social media platform, but with a very narrow focus. Health Consumers' Council has hosted HEN for a couple of years now after it was set up as an online community of practice with a focus on building capability in consumer engagement.
We'll share more about HEN with you over the coming weeks and months – but come along and be part of it!
What does a good patient experience look like?
Global Patient Experience Week is from Monday 26 April - Friday 30 April.
Each year, this is an opportunity to celebrate and acknowledge the people who make a positive impact on people's experience of health services.
In WA, for the last couple of years, Health Consumers' Council has adopted this theme for Patient Experience Week:
Kindness, connection, community – see the whole person
Djinang Kwop Wirrin ("see good spirit" in Noongar)
We’re continuing this theme from previous years because it encapsulates what consumers talk about when they talk about what makes a positive experience for them as they access health services.
This year, HCC will be acknowledging some of the great work happening across WA by announcing the winners of the Health Consumer Excellence Awards. The nominations are being reviewed and we will share more information about these soon!
In the meantime, we'd like to know:
What makes a good patient experience for you?
- what does the theme of “kindness, connection, community – see the whole person” mean to you – in practice?
- What does it look like when you see it in action?
- What practical things help to make “kindness, connection, community – see the whole person” a reality for you in health?
We’re asking consumers to share their examples with us in this short survey. We plan to share the feedback we gather through this survey with staff in health services to help raise awareness of what they can do improve the patient experience. We will share this feedback during Patient Experience Week 2021 and throughout the year.
You can share your feedback by email, or by completing this short survey, or by video - please tell us your views!
Advocacy Workforce: Advancing Rights and Equity
Advocacy Workforce: Advancing Rights and Equity (AWARE) is a sector-driven co-design project that will provide specialist training and skills development for professional individual advocates, working in areas of social justice and human rights.
Call out for lived experience participants
Do you know someone who would like to join our Lived Experience Project Advisory Committee? This group is pivotal to the success of the AWARE program.
This is your chance to contribute to the content of the training course that we are designing for professional advocates. You don’t need any experience in course developed or training – we are just keen to hear about individual experiences working with individual advocates.
To be eligible, you must have lived experience as a client of an advocacy service and be available some Monday afternoons for meetings.
Individuals will be selected to ensure a good mix of expertise and diverse representation and each participant will receive an honorarium of $70 for attending each meeting.
Click here for more information and/or to nominate by 2 April 2021.
Please follow the AWARE Facebook page to keep up to date with news, opportunities and information about this project.
Choosing Wisely Week
Choosing Wisely Week from 22-28 March is an opportunity to promote the work being done to reduce unnecessary tests, treatments and procedures.
Choosing Wisely Australia is part of a global healthcare initiative to improve the safety and quality of healthcare.
Empowering consumers and carers to feel confident to ask questions is important for safety, quality and good health outcomes.
There are 5 questions you can ask your doctor or other healthcare provider to make sure you end up with the right amount of care. You can find these questions, tips for communicating with your doctor, and patient experiences at https://www.choosingwisely.org.au/consumers-and-carers
If you work in healthcare, you can access a toolkit to help promote Choosing Wisely at https://www.choosingwisely.org.au/implementations/resource/choosing-wisely-week-engagement-toolkit
If you work in a clinic or hospital, you can also access videos to play in your waiting room, pharmacy, clinic or other health service. To find out more about this, email firstname.lastname@example.org
Care Opinion Australia – Virtual Conference
The majority of health services across Australia collect patient feedback as part of their everyday processes but is this information being effectively collected and used?
With online engagement continuing to rise, are health services in Australia missing a key opportunity to better connect with their patients to improve service delivery?
Join Care Opinion CEO, respected academic and humanitarian, Associate Professor Michael Greco as he brings together world-renowned international quality experts and local presenters to answer these pressing questions and many more.
The Care Opinion free virtual conference will share key insights, research, case studies and learnings from across the UK and Australia to help attendees better understand the value of patient feedback and the important role public online feedback plays across Australia’s healthcare system.
A must-attend 2021 event for those in the healthcare sector, particularly CEOs, Patient Experience and Quality Managers, key industry stakeholders and consumer groups.
Virtual conference: The purpose of patient feedback: how does public online feedback address the missing link?
Wednesday 28 April 2021, 3 pm – 5 pm (AEST)
Consumer participation opportunities
- Every week we send out an email with information about consumer consultations, representative opportunities and relevant workshops - if you'd like to sign up for this you can do so at http://eepurl.com/cREYkn
FECCA Survey on the Royal Commission into Aged Care Quality and Safety Final Report
Following the delivery of the Royal Commission into Aged Care Quality and Safety’s Final Report, the Federation of Ethnic Communities’ Councils of Australia (FECCA) would like to hear from you about your experiences with aged care, your thoughts on the Royal Commission and what recommendations or outcomes you hoped to see from the Final Report.
If you would like to share your thoughts, the survey is available at https://www.surveymonkey.com/r/FECCAsurvey
Responses will be collected until the 29th of March 2021. If you require a translated version of the survey, please contact email@example.com
caring@home for Aboriginal and Torres Strait Islander Families
Health professionals, health workers and other interested people are invited to take part in a national consultation to assist in the development of tailored resources for the caring@home for Aboriginal and Torres Strait Islander Families project.
The Australian Government-funded project aims to support the provision of palliative care at home for Aboriginal and Torres Strait Islander people, when this is preferred. This may help connect family, culture, community, country and the spiritual wellbeing of Aboriginal and Torres Strait Islander people.
You can participate by attending an in-person event or an online meeting, via an online survey, or by having a one-on-one conversation with the project manager. To participate or register visit https://www.caringathomeproject.com.au/tabid/6118/Default.aspx
WA consultations will be held between 17-21 May 2021.
For more information read the factsheet
WA Health Outpatient Reform Community Conversations
In partnership with the Department of Health, the CCIProgram will be holding 3 Community Conversations across the Perth Metropolitan area. At each event Consumer Representatives will be invited to join the discussion about the reform of hospital outpatient services in the Perth metropolitan area.
Health reform is currently underway to improve health service delivery and patient care. These Conversations will give the community an opportunity to have a voice in shaping this work with a particular focus on the delivery of outpatient services.
Each of the events will be held in a different metropolitan area to capture the patient experience of north, south and east health services.
Wednesday, 31 March
Location: Murdoch University - South St, Murdoch
Register by: 26 March http://bit.ly/OPRP_Murdoch
Wednesday, 14 April
Location: Arthritis & Osteoporosis WA - 17 Lemnos St, Shenton Park
Register by: 9 April http://bit.ly/OPRP_ShentonPk
Tuesday, 27 April
Location: Ellenbrook Community Library (Community Resource Centre)
Register by: 22 April https://bit.ly/OPRP_Ellenbrook
Value Based Healthcare Conference Community Conversations
In partnership with the Continuous Improvement in Care - Cancer (CIC Cancer) and HBF, the CCIProgram will be supporting two Community Conversations that will feed important information into the 2021 Value Based Healthcare Conference.
The goal of value-based healthcare is to improve patient health outcomes while reducing the overall cost of healthcare. Globally it is gaining momentum and transforming clinical practice, service delivery, payment, and policy to achieve the best outcomes for patients.
The Conversations will provide an opportunity for consumers and community members to discuss key factors related to value based healthcare, its potential impact on health consumers and what is most important to them. This information will provide an important summary of consumer priorities that will feed into the inaugural Value Based Healthcare Conference, held 27-28 May.
Virtual Regional Community Conversation
Wednesday, 21 April - 6-8pm (Online)
If you live in the Albany, Geraldton, Bunbury or Far North regions, please follow the link to register your interest.
Pre-Conference Community Conversation
Wednesday, 26 May - 10-12pm
If you live in the Perth metropolitan area, please follow the link to register your interest.
Violence against women across the lifespan – survey
Though violence and abuse may occur across the lifespan, historically definitions of and responses to abuse tend to be based on the age of the person experiencing the abuse (i.e. child abuse, family and domestic violence, and elder abuse). Siloed responses to abuse have the benefit of allowing services to focus on the specific needs and issues of vulnerable populations, however there may also be disadvantages, such as individuals falling through gaps between various sectors, missed opportunities for collaboration and learning, and reduced effectiveness, or even duplication, of services. Furthermore, as these siloes are predominantly age focused, they may not necessarily fit emerging forms of violence (e.g. adolescent violence).
Researchers from Curtin University (research student Amy Warren and supervisors Dr Barbara Blundell, Professor Donna Chung and Dr Rebecca Waters) are conducting research that considers violence against women across the entire lifespan, exploring whether experiences and responses differ across the lifespan.
They are looking for practitioners and women with lived experience to participate in online surveys, which will take 30 minutes to 1 hour to complete.
The practitioner survey can be accessed via https://curtin.au1.qualtrics.com/jfe/form/SV_bDwFeHW5vwMSCnX.
Curtin University Human Research Ethics Committee (HREC) has approved this study (HRE2020-0751).
If you have any questions about the project or would like any further information, please contact Amy Warren at firstname.lastname@example.org or Dr Barbara Blundell at email@example.com
Strengthening the Rare, Genetic, and Undiagnosed Conditions Sector in WA
ConnectGroups WA is working with the Department of Health to gain an understanding of the services provided by Support Groups and Organisations that assist people living with rare, genetic and undiagnosed conditions in WA. They are keen to find out about as many grassroots organisations as possible.
If you know of any relevant support groups or organisations, please complete this short survey
Should you have any questions please do not hesitate to contact Robbie Glyde on 08 9364 6909 or via email Robbie@connectgroups.org.au
One Stop Shop Project Implementation Management Group Consumer Representative
The Mental Health Commission is looking for a consumer representative, with a lived experience of co-ocurring mental illness and alcohol or other drug use for the Project Implementation Management Group (PIMG) at the Mental Health Commission.
The role of the Program Implementation Management Group (PIMG) is to provide support to the project team, leadership across areas of influence and monitor the project milestones.
More information about this paid participation role can be found in the Expression of Interest
and the Terms of Reference
. To apply complete the application form
(including a description of how you meet the requirements of the role and any other experience you have) and return it by COB, 29 March 2021
St John of God Hospital Murdoch - Mental Health Consultative Committee
St John of God Hospital Murdoch is establishing a new mental health service with a contemporary and patient-centred model of care which will be fully integrated across inpatient, day programs and outpatient settings. The team are seeking expressions of interest (EOI) from people with relevant experience who can contribute their perspective to inform the design new services and to improve existing ones.
There are five positions on the Mental Health Consultative Committee available for up to 12 months. Meetings will start in March 2021 and take place monthly for 2 hours during business hours. Meetings will be held at St John of God Hospital in Murdoch.
The team would like to hear from consumers who have had experience using the current mental health services within the metropolitan area and/or who has been a carer for someone who has used these services.
Participants will receive a consumer participation payment of $70 per meeting they attend.
No closing date currently - EOIs will be accepted until all positions are filled.
To find out more, or to submit an EOI contact:
Hannah Howlett, Patient Experience and Volunteer Coordinator, tel: 9428 8634 or email firstname.lastname@example.org
National webinar: Living Evidence and Consumers
What are “living guidelines” and how are consumers involved? An information and discussion webinar
- Date: Tuesday 27 April
- Time: 10am - 11am WA time (12pm - 1pm AEST)
- Register: click here for free registration
Part of the #CHF Talks webinar series hosted by the national Consumers Health Forum.
The National COVID-19 Clinical Evidence Taskforce
brings together 32 peak health professional bodies from across Australia. Each week, more than 250 Taskforce contributors work together to find new research and quickly incorporate that research into national, evidence-based guidelines for the clinical care of Australians with COVID-19. These are living guidelines, updated with the latest global research in near real-time with trusted, up-to-the minute advice to clinicians providing frontline care.
Guideline for managing malnutrition and frailty in the community - consumer interviews
Exploring barriers and enablers to providing oral nutrition support to malnourished and frail patients in the community
You are invited to participate in a once-off interview on your experience with receiving nutrition advice or support in the community. This research study is being conducted by Griffith University and is supported by Danone Nutricia. To be eligible to participate, you must meet each of the following criteria:
Background and purpose:
- Adult (18 years or older)
- Receiving (or have previously received) nutrition support or advice to help gain weight, or treat malnutrition or frailty, from a healthcare professional in the community
- Have a way of being contacted (e.g. phone or Zoom/Skype)
The team are designing an Australian and New Zealand guide for managing malnutrition and frailty in the community. They would like to hear your experiences and views on receiving nutrition advice or support in the community. This information will help ensure the guide is relevant to consumers like yourself.
What does your participation involve?
If you agree to take part in this study, the team will ask you some questions on your experiences with receiving nutrition support and advice from clinicians in the community. The questions will be asked in an interview that will take place via phone or videoconference, at a time and date convenient to you. The interview will take approximately 15-30 minutes and will be audio recorded.
to review the participant information sheet for more information.
f you have any further queries about this study or would like to participate, please contact Megan Rattray on 0449690293 or email@example.com
The deadline for responses is Friday 30 April.