The newsletter of the Health Care Consumers’ Association Inc.
 Issue 05 / 27 March 2026

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In 2022 HCCA did some work for the Australian Commission on Safety and Quality in Health Care about what consumers need to be able to give informed consent to health care procedures. Following that work, HCCA will soon be reviewing two new information resources the Commission has drafted. These are intended to give practical guidance about informed consent to patients and also to people who are substitute decision makers for others.

We are looking for people who are interested in reviewing these guides from a patient perspective or from a substitute decision maker perspective. Each guide is 4-5 pages long. To provide feedback you could

• participate in a focus group
• have a one-on-one chat with staff
• review a copy and provide written comments 

If you are interested in helping us review and provide feedback on these guides, please complete this expression of interest form. The team is looking forward to hearing your feedback.

Lachlan Atyeo
Executive Director

In this Issue

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

Upcoming HCCA Events

Thursday 16th April, 3:30pm – 5pm
Online Via Zoom

You have the right to be an equal partner in your health care! But how do you speak up for yourself and what you need? Join this session to learn more about advocating for yourself and what to expect.

Infrastructure Update

Lachlan, Kate and Bernadette recently visited two Step Up Step Down mental health residential facilities as background preparation for some upcoming work on ACT guidelines for short-to-medium term residential health facilities. The visits provided insight into food for thought about design features that people need when they stay at a sub-acute health facility for weeks or months.

If there is something you’d like us to know about the design of residential health facilities, you can get in touch with [email protected]. 

— Bernadette
(Infrastructure Project Officer)

Policy and Research Update

A progress report has been released for the Inquiry into the ACT health system data, demand and processes. The inquiry is reviewing how the ACT’s public health system works and where it can be improved.

So far, the inquiry team has spoken with more than 170 people and organisations, including doctors, nurses, health workers and community groups. It has also received 27 written submissions (including one from HCCA).

The progress report shares the main themes raised so far. These include pressure on hospital services, how health data is collected and used, workforce challenges, and how decisions are made across the health system.

The report doesn’t include final findings. It is an update on what the inquiry has heard so far. A final report with recommendations is expected by 30 June 2026.

You can read the progress report on the ACT Government website.

— the Policy and Research team
(Jess, Stephen, and Shivana)

Health Literacy Update

This fortnight, C presented an online session on Advance Care Planning and Ivapene presented the second edition of My Health Record for the Vietnamese group at MCCI.

Ivapene also attended 2 community events:

Commonwealth Day Multifaith Celebration March 2026.

And the Bluestar & Hindi Council of Australia’s Iftar Dinner March 2026.

Caption: Iftar Dinner March 2026 Multicultural Community Leaders

We’ve added a new page on Digital Health Tools on the Canberra Health Literacy Hub. This page explains the key differences between the Digital Health Record and My Health Record, and what to look for in health apps. Thanks to members Margo, Ravi, Sue and Melissa for reviewing the page!

We also published our report from the Disability and Health Literacy project on the HCCA website. This was presented to the ACT Disability Health Reference Group who will be advising the ACT Government on how to implement the recommendations. Thank you to everyone who shared their experiences and expertise in this project!

— the Health Literacy team
(C and Ivapene)

Health Literacy - QUM Update

It has been a busy fortnight, with 2 consumer focus groups for the Menopause topic under QUM Grant #2. We had 12 great participants join us online to chat through their feedback on a draft Decision Aid. The Decision Aid supports shared decision making. It will help GPs and consumers talk about medicines for menopause during an appointment.

Other Decision Aids that have already been published for the QUM programs include those for gout and antidepressants.

There will be more opportunities for HCCA members to provide feedback on consumer resources in the coming months, as Jean Hailes works with us on developing resources for Menopause. In the meantime you can check out their new Menopause webpage.

This week is Harmony Week, which:

• celebrates the cultural diversity of our community, and
• promotes the importance of inclusion.

Access to culturally appropriate health information helps support informed choices about care.

To mark Harmony Week, we’d like to highlight the range of multicultural health resources developed under QUM Grant #1. There are a number of resources available in multiple languages.

Explore our QUM multicultural resources:

• Eczema care for everyone – Available in Arabic, Bengali, Greek, Hindi, Italian, Korean, Simplified Chinese, Traditional Chinese, Spanish, Vietnamese and Croatian
  
  
• Translated Gout resources – Available in Arabic, Vietnamese, Simplified Chinese, Māori, Samoan and Tongan
  
  
• Gout resources for Pasifika community - Available in Samoan, Tongan and Māori
  
  
• Understanding Oral Anticoagulants - animation – Subtitles available in Simplified Chinese, Traditional Chinese, Arabic, Vietnamese, Hindi, Greek, Italian, Korean, Thai

These resources can be shared with community members, family and friends who might find them useful. We are also developing translated versions of the Anticoagulants Care Plan into 9 different languages. Keep an eye out for these soon!

— the QUM team
(Kathryn, Nadia and Darcy)

Chronic Conditions Network Update

C and I were honoured to attend the Launch of the MND Parliamentary Friends group and hear the brave stories of families fighting for their loved ones to get the support they need during the progression of this unrelenting disease.

Caption: Michelle and C at Launch

The 'asks' MND Australia are advocating for in Parliament are:

• Fund $12 million for a data platform that links all MND data for national impact. Fragmented and ageing data sets are holding back research and care breakthroughs. By creating a data platform that can preserve and interrogate clinical, research and registry data, there is opportunity for advancing both research and care practice.
• Fund $30 million (over 3 years) to increase access to quality specialist care and research. MND specialist clinics and State Associations perform heroic feats to ensure national coverage for people living with MND. This small amount of funding would allow them to employ key staff roles to enable increased coordination and access of care, while expanding access to clinical trials.
• Close the support gap between NDIS and aged care. Older Australians who are diagnosed with MND face unacceptably high wait times and inadequate funding to support their care needs. This age-based discrepancy leads to poorer care and greater stress for older Australians living with MND and their families.

We support the mission of MND Australia and we will back up their advocacy locally in the ACT region.

— Michelle
(Chronic Conditions Network Coordinator)

Consumer Representation and Advocacy Opportunities

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

 New! 

This committee monitors the actions of the Blood Management Standard at Canberra Health Services, including:

• Integrating clinical governance
• Applying quality improvement systems
• Partnering with consumers 
• Optimising and conserving patients' own blood 
• Documenting blood management information 
• Prescribing and administering blood and blood products 
• Reporting adverse blood management events 
• Storing, distributing and tracing blood and blood products
• Availability of blood

This role would suit an experienced, confident consumer representative who has an interest in the safety and quality of health care and an understanding of the National Safety and Quality Health Service Standards, and is able to manage reading background materials and meeting papers, and can provide a consumer perspective and engage in discussion about issues from a broad patient perspective.

To learn more or nominate for this opportunity, please visit the Consumer Opportunities page on our website.

 New! 

This committee oversees the effective systems of clinical governance for the allied health professions at Canberra Health Services.

This would suit an experienced consumer representative who has an interest in allied health, an understanding of clinical governance or the willingness to learn about it and is confident to join a discussion and contribute a consumer perspective to the professional leads of these areas.

To learn more, please visit the Consumer Opportunities page on our website.

The Division of Rehabilitation, Aged and Community Services (RACS) Quality and Safety Committee provides leadership and guidance to the Division on Quality and Safety matters.

The Committee has the objectives of:

• Empowering staff to provide safe and high-quality care to our consumers
• Making decisions about allocation of resources to make improvements or resolve issues
• Communicating with and on behalf of the Division about quality and safety matters

This will suit a consumer who has an understanding of how allied health works and wants to work with a passionate team to improve consumer quality and safety.

To learn more, please visit the Consumer Opportunities page on our website.

Items of Interest

World Delirium Awareness Day is on 11 March. It raises awareness of delirium and why recognising it early matters. Delirium is a common, serious and often preventable complication that affects older adults. It can come on quickly during illness or a hospital stay.

HCCA is a member of the Prevention and Early Delirium Identification Carer Toolkit Project. It is a new model of care that teaches carers about delirium prevention and management. It also aims to support carers to take an active role in their person’s care and recovery.

Join Health Consumers NSW online on the 24^th of March 12-1 pm for the next in a series of webinars on Artificial Intelligence in healthcare. This one focuses on the kinds of questions consumer representatives should be asking when AI is part of a health service or research project.

Kidsafe ACT is committed to making little Canberrans safer in the car, so they will be hosting a series of information sessions aimed at people who have a role in transporting children. The sessions will upskill caregivers and professionals on the functions of child car seats, and there will be a particular focus on how to support children with additional needs.

The dates for the sessions are:

• Thursday 7^th May at 3:30pm in person at Kidsafe ACT
• Monday 11^th May at 5:00pm in person at Kidsafe ACT
• Friday 19^th June at 12:00pm in person at Kidsafe ACT

**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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