The newsletter of the Health Care Consumers’ Association Inc.
 Issue 11 / 18 June 2026

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The ACT budget was released on the 10th of June. We know that the health budget is under a lot of pressure and scrutiny at this time, which reinforces that it is important to continue with our advocacy messages to ensure that policy and budget decisions still place consumers at the centre of the system.

I'm sure that members have seen some of the recent announcements around infrastructure, the Palliative care unit and some of the other investments in other areas like breast cancer screening and paediatric orthopaedic services, which are important investments into the future. We will continue to ensure that HCCA works with and holds strong advocacy around placing consumers centrally in these investments.

The ACT Government is undertaking the next stage of work in voluntary assisted dying policy by considering what should happen if a person loses decision-making capacity after the final assessment stage of the voluntary assisted dying process. 

ACT government will be looking to convene a Citizens Jury which will provide recommendations to Government on how to establish a substitute decision-making process with strong safeguards, enabling people who have expressed a clear wish to access voluntary assisted dying at the end of their lives to have their decision upheld. 

HCCA has welcomed the Government's plan to use a participative democratic process to provide strong, sustained consumer input into policy decisions for this service, to ensure that they are broadly informed, and reflect community attitudes and individual needs.

The issue of loss of capacity for people who have chosen the Voluntary Assisted Dying pathway was raised by community members and organisations in the ACT during the initial consultation process for this service. The review announced recognises some of these concerns.

It is essential that the Voluntary Assisted Dying Service is continually advised and reviewed by the community who may choose to use it, to ensure that the service prioritises high quality care, supports consumer choice and control at end of life, whilst embedding strong safeguards against misuse.

You can read the government media release on the website of Chief Minister, Treasury and Economic Development Directorate. HCCA provided a quote for this release.

We are pleased to welcome Mallika Chaulagain into our team as the Communications and Engagement Officer. Mallika (she/her) is from Nepal and moved to Australia in 2022 to study. She holds a Master of Health Communication and a Master of Health Policy and Planning from the University of Sydney. She has been working as a health communication professional since 2016 and is passionate about empowering individuals, populations, and communities to make healthier choices. 

Mallika has settled right in with the team and has really hit the ground running! 

We are excited to announce that our well-loved fortnightly newsletter is getting a makeover from the next issue. The new template will be more streamlined to ensure that we provide you with better updates, dedicated sections, and easier reading. We want CB to be informative, interesting and engaging for members. The makeover will include a new feedback section to get your feedback on the template and content. Please share your thoughts with us.

Stay tuned for the next issue!

Lachlan Atyeo
Executive Director

In this Issue

• Upcoming HCCA Events
• Infrastructure Update
• Health Literacy Update
• Health Literacy - QUM Update
• Chronic Conditions Network Update
• Consumer Representative Update
• Consumer Involvement and Representative Opportunities
• Items of Interest

Upcoming HCCA Events

Infrastructure Update

The new Northside Hospital will include a birth centre (in addition to a Maternity Unit). Birth Centres are typically a home-like environment suitable for people who have low- risk pregnancies and intend to have a vaginal birth. On May 29, HCCA staff joined midwives and staff of Canberra Health Services, Infrastructure Canberra, ACT Health and Community Services Directorate, and Winnunga Nimmityjah to focus on what is needed in a new Northside Hospital Birth Centre.

Caption L to R: The HCCA team (Kate, Pene, Jess and Michelle) with midwife Hana

— the Infrastructure Project Officer
(Bernadette)

Health Literacy Update

We had a great time at Reconciliation Day connecting with community and celebrating Aboriginal and Torres Strait Islander culture. Over 135 people stopped by the stall throughout the day to have a chat and learn about HCCA’s work. We debuted a new banner with the text “Welcome” in several languages that people have shared with us at previous events – several visitors stopped by to take selfies and tell us how important it is to see their culture recognised in health care.

Caption L to R: HCCA team (C, Lachlan, Ivapene) at Reconciliation Day stall

We attended the National Sorry Day event hosted by Winnunga Nimmityiah Aboriginal Health and Community Services. Participating in this event reflects our ongoing commitment to listening, learning and strengthening culturally safe and responsive healthcare across the ACT.

Ivapene attended the African Day celebration where she revisited conversations about health literacy presentations to the community.

Caption L to R: Yevette, Ivapene, Zakia and Charles at 2026 Africa Day Celebration

— the Health Literacy team
(C and Ivapene)

Health Literacy - QUM Update

Following Reconciliation Week last week, we wanted to highlight a few of our QUM resources that have been specifically developed for Aboriginal and Torres Strait Islander communities:

• Eczema Care for Aboriginal and Torres Strait Islander Communities
• Gout resources for Aboriginal and Torres Strait Islander Communities

It was great to have some of our HCCA team at the Reconciliation Day event able to share QUM and other resources with the Canberra community.

We have recently published some initial resources on menopause on HCCA’s QUM page. These are guides for applying different types of menopause treatments. There will be more updates to our menopause page soon.

Please share these resources with your network!

— the QUM team
(Kathryn, Nadia and Darcy)

Chronic Conditions Network Update

Michelle and Ivapene attended Hepatitis ACT’s 30-year anniversary roundtable to help map out the pathway to eliminating viral hepatitis as a public health threat in the ACT by 2030.

We joined clinicians, policymakers, peak bodies, researchers, community organisations, and people with lived experience and spent the day naming systemic barriers, identifying leverage points, and making commitments to collective action. We thoroughly enjoyed the event and felt positive about the next steps to come in bringing the day’s ideas into practice.

Caption: Michelle and Ivapene from HCCA with Lived Experience Consumers with Hepatitis ACT

— Michelle
(Chronic Conditions Network Coordinator)

Consumer Representation Update

HCCA’s first ‘Reps’ Roundtable’ was held on 25 May with C Moore (our Health Literacy Officer) presenting ‘Questions to ask about AI as a Consumer Representative’. This event is intended to be the first of an ongoing series which helps our consumer representatives to meet each other, share information and develop knowledge and skills to help them in their health advocacy work.

C’s presentation on AI gave everyone an opportunity to learn more about artificial intelligence, it’s uses in healthcare and what to be aware of as a consumer representative. The presentation was adapted from the University of Wollongong guide: Artificial intelligence in healthcare: An introductory guide for consumer and community representatives.

Here are some questions to consider as a consumer representative:

Privacy

Does it follow Australian privacy regulations

Accuracy

What is the evidence for this use of AI?

Is it being checked by humans?

Can consumers get records corrected?

Bias

How are they controlling for bias? 

Has the model been trained on divers populations?

Consent

Can consumers opt out? Will this impact their care? 

Behaviour

Is AI use changing behaviour of clinicians? How?

We are seeking feedback from our members on whether they would be interested in attending additional workshops focused on AI and its uses in healthcare. Please send your feedback to [email protected] or call us at 02 6230 7800.

— Av
(Consumer Representatives Program Coordinator)

Consumer Representation and Advocacy Opportunities

Please visit Consumer Opportunities on the HCCA website to learn more about, and nominate for any new opportunities.

Items of Interest

There are currently outbreaks of diptheria in parts of northern and central Australia. Diptheria is a bacterial infection that usually affects the nose, throat, or skin. It can cause severe disease and death in children and people who are not vaccinated.

Children, adults under the age of 20, and pregnant women can be vaccinated for free at a GP or pharmacy under the National Immunisation Program. You should also get a booster vaccination (usually $25-70) if you are aged over 50 and have not had one in the last 10 years.

The ACT Government will provide free vaccines for all Aboriginal and Torres Strait Islander people aged 20 or over who:

• have not had a diphtheria-containing vaccine in the last 10 years, or
• are travelling to an outbreak-affected area and have not had a diphtheria containing vaccine in the last 5 years, or
• are unvaccinated or have missed a vaccination

Speak to your regular GP or community pharmacist to get vaccinated.

CHS recently celebrated Clinical Trials Day and thanked the more than 5,800 ACT consumers and patients who offer their time and bodies to clinical research. CHS has more than 250 trials underway and they asked some of their valuable participants about their experiences with clinical trials. For many it was simple: they want to make a difference.

Read their stories on the CHS website.

 The national model is accompanied by a practical guide to implementation and tools. Health services can use the guide to review their organisation’s clinical governance arrangements, identify gaps, develop an implementation plan, and monitor delivery of high-quality care. 

To learn more about the mode, please visit the website of Australian Commission on Safety and Quality in Health Care.

The University of Southern Queensland is leading a project which aims to develop effective treatment and management recommendations, and inform health policy, for trans and gender diverse people with endometriosis and other pelvic pain. As part of this phase of the project, they are conducting a structured Delphi study (a research method used to gather consensus from a panel of experts on a specific topic) with stakeholders who have relevant expertise in trans and gender diverse experiences of endometriosis and associated pelvic pain. This may include lived experience, clinical, research, advocacy, or professional expertise.

Participation involves completing 2–4 online survey rounds over approximately 6–8 weeks. Participants must be 18 years of age or older.

To find out more about this study, please contact

Dr Brianna Larsen

Telephone: +61 7 3812 6045 Email: [email protected]

Or

Mahaila Day

Email: [email protected]

UniSQ HREC Approval Number: ETH2026-007

**FREE interpreter services available over the phone via the Australian Government’s Translation and Interpreting Service (TIS) on 131 450**

© 2026 Health Care Consumers' Association Inc, All rights reserved. Edited by Lachlan Atyeo.

Our mailing address is:
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02 6230 7800

Consumer Bites is the newsletter of the Health Care Consumers' Association. Consumer Bites provides a small snippet of health related articles our members might find interesting to consider and analyse. The HCCA does not endorse any opinions or the claims contained within the articles.

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