The newsletter of the Health Care Consumers’ Association Inc.
Volume 11 / Issue 11 / 21 November 2024

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Today we held the final meeting and celebratory lunch for the Paediatric Liaison and Navigation Service Consumer Reference Group, as HCCA’s funded part of this project draws to a close. This advisory group of consumers and consumer organisation representatives has for several years partnered with Canberra Health Service in the design and delivery of a brand new service which has been running now for 18 months. At the time of writing it is supporting about 140 families who have children with complex medical needs. Feedback from the families has been glowing, and we at HCCA are incredibly proud of this work. You can read more about the Paediatric Liaison and Navigation Service here. In the next edition of Consumer Bites we will share some learning modules we made for this project, which support parents to learn advocacy skills and knowledge for their families.

Pictured: PLaNS and HCCA staff
Left to right: Kirsty Cummin (CHS), Jess Mathie (CHS), Kate Gorman (HCCA) Kathryn Rodda (CHS), Gemma Pearce (CHS), Shivana Chandra (HCCA), Phyo Courtis (CHS), Nat Zuber (CHS).

We are excited to share our finalised review of the HCCA Consumer Representatives Program. Every few years, we look at how the program is working to ensure that there is consumer input at all levels of ACT health services. We look at relevant research and interview and survey health service providers and our consumer representatives. This report documents what’s going well, areas where improvements are needed, and how we can make consumer representation more effective for consumer representatives and health services.

You can read a summary and download the whole report on the HCCA website here: Consumer Representatives Program Review: 2019-2023

We have also documented the experiences and learnings from our consumer representatives and staff who were involved with Canberra Hospital Expansion Project. The learnings documented in this report are intended to help guide consumer participation in future health infrastructure projects, as consumer participation in the design of health infrastructure is it relatively new field.

You can read “Reflections on Consumer Involvement in the Canberra Hospital Expansion Project (CHEP)" on the HCCA website: Reflections on Consumer Involvement in the Canberra Hospital Expansion Project.

Kate Gorman
Deputy Director

In this Issue

• Policy and Research Update
• Health Literacy Update
• Consumer Involvement and Representative Opportunities

Policy and Research Update

On Tuesday 28 May, HCCA appeared before the Legislative Assembly Inquiry into Raising Children in the ACT. You can see our staff, Jessica Lamb and Michelle Cullen, talking about the challenges families face accessing health care in Canberra on the ACT Parliament website.

If you have had difficulty accessing the health care your children need locally, we would be interested in hearing about your experience.

We are also interested in hearing about your experience of accessing private health care in the ACT. Did you pay a large out of pocket cost? Did you know what to expect when you received your bill?

For both of these issues, please contact Jessica Lamb at [email protected] or by phoning HCCA’s office on 6230 7800 if you would like to share your story.

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

This year’s Canberra Health Annual Research Meeting (CHARM) will be from 17 to 21 June, 2024.

CHARM highlights the importance and value of health research in the ACT. It offers a chance to network and collaborate to promote multidisciplinary research.

Consumers, carers, researchers, students, health professionals, policy makers, and other partners in the ACT health system are welcome to attend.

You can find the program and register to attend on the CHARM website.

Health Literacy Update

C and Ivapene had an exciting start to the fortnight presenting the ‘Diversity in Healthcare’ session to Canberra Health Services (CHS) Community Care Program (CCP) staff. The session was part of CCP staff’s Interprofessional Development Day. It was presented in a hybrid platform across 5 locations with 74 participants.

— the Health Literacy team
(C and Ivapene)

Consumer Involvement and Representative Opportunities

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

 Closing Soon!  Closing date: Wednesday, 3 July 2024

Canberra Health Services (CHS) is looking for a consumer to join their Oral Health Services Consumer Reference Group. The role of the committee is to provide a space for discussion, advice, and feedback between Oral Health Services, consumers, and consumer organisations.

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

 Closing Soon!  Closing date: Sunday, 30 June 2024

Health Consumers NSW (HCNSW) is looking for consumer representatives who have worked on health service or research data projects. Consumers are invited to participate in their research project exploring the thoughts, attitudes and beliefs about participating in data sharing or data linkage consumer groups. This experience may be as Consumer Representatives, people with health consumer data advocacy experience, or those on advisory groups or committees.

This project is a collaboration with the University of Wollongong and HCNSW, and is part of a larger study focused on how we can use general practice data for research in ways that the public, GPs and other stakeholders will find ethically justifiable and acceptable. Your thoughts well help HCNSW develop training for consumers who are new to data sharing projects.

To participate you will be invited to have a 1-hour, one-on-one phone conversation and receive a $50 visa gift card as a thank you for your time.

• Learn more about the Data Sharing research project.
• Download the Data Sharing research project participant information sheet.
• If you are interested in participating or need more information, please contact Dr. Heidi Green at [email protected].

Are you a migrant who speaks up for consumer needs in health care as a consumer representative? Have your experiences shaped how you advocate in unique ways?

Sona Jerry, an Honours student at ANU, is doing a project to understand the important role migrant consumer representatives play in shaping health care decisions on committees and the challenges they face while participating in committee settings.

You are invited to participate if you:

• identify as a migrant, and
• are currently serving or have served as a consumer representative in health care.

Your thoughts well help us have a deeper understanding of intersectionality and the challenges migrants face when advocating for better healthcare.

• Learn more about how to participate.
• Download the participant information sheet for more information about the project.
• If you would like to express your interest, please fill out this short form, and the team will be in touch with you.
• For more information, please contact Sona directly at 0420 573 681, or email [email protected].

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

© 2024 Health Care Consumers' Association Inc, All rights reserved. Edited by Kate Gorman.

Our mailing address is:
100 Maitland St, Hackett ACT 2602
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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