Consumer Education and Awareness

Report (2023)

Project Overview

Crohn’s & Colitis Australia (CCA) completed a major 4–year research project in collaboration with Swinburne University of Technology Centre for Global Health and Equity to improve the information and services that are provided to people with Crohn’s disease and ulcerative colitis.

Thirteen major project activities were implemented and evaluated to make it easier for people living with IBD and their carers to access, understand and use health information and services.

Project Activities

A4 poster to display in clinic rooms to help clinicians link their patients to CCA.Complete

Website redesigned and launched in 2022 to improve navigation and user experience.Complete

Website information published on the management and treatment of IBD:

 Crohn’s disease treatment
–    Ulcerative colitis treatment
–    Complications of IBD
–    Medication for IBD
–    Nutrition
–    Psychological health
–    Surgery
–    Remission
–    Covid-19
–    Vaccinations  

Youth specific website information published:

–    Kids and IBD
–    Teens and IBD
–    Parents and IBD
–    Moving from paediatric to adult care

My Partner in Care booklet converted into an animation video Managing my IBDComplete

Website information published on communicating about IBD: 

–   Supporting someone with IBD
–   Communicating about my IBD

Information about financial assistance, Medicare, PBS, private health insurance, and Centrelink benefits.Complete
Working with IBD booklet converted into an animation video Working with someone who has IBDComplete

Students with IBD booklet converted into an animation video My school friend has IBDComplete

Connect with a Peer service provides online support for people living with IBD, their families and friends. Complete

Select CCA website resources translated into 5 languages other than English:
– Arabic
– Farsi
– Punjabi
– Simplified Chinese
– Vietnamese

Support for people living in rural and remote locations. The IBD Service Locator assists people living with IBD locate a gastroenterology health service near them. Complete

Print resource for libraries including information on how to access digital services and CCA. Complete

CCA has prioritised these activities based on 70 ideas that were generated in interviews and workshops with almost 40 people with IBD and carers and almost 40 healthcare professionals. CCA is excited to progress this project into the next phase and produce high quality, evidence based information that is easily accessible to consumers. The materials and interventions are expected to be a range of online, interactive and print materials.

The first stage of this project was to undertake an important survey of the health literacy of people living with IBD or caring for someone who has IBD. We are very grateful to more than 800 people with IBD and carers who provided information that will help CCA make it easier for people living with IBD and their carers to access, understand and use health information and services.

Research publications

Optimising Health Literacy and Access (Ophelia) process for IBD paper

Codesign and implementation of an equity-promoting national health literacy programme for people living with inflammatory bowel disease (IBD): a protocol for the application of the Optimising Health Literacy and Access (Ophelia) process

Global Health Literacy Presentation

The CEA-IBD project and findings were presented at the Global Health Literacy Summit in October 2021.

This project has been approved by the Swinburne University of Technology Human Research Ethics Committee (Ref:20202968) and is funded by the Australian Government Department of Health.

Project Advisory Committee

We are grateful to the Project Advisory Committee for their dedication and expertise to guide this project.

A/Prof Gregory Moore (Chair)Director, Crohn’s & Colitis Australia
A/Prof John DingGastroenterologist
A/Prof Simon KnowlesPsychologist
Alexandra SechiNurse
Julie WeldonIBD Community Representative
Hugh WhittakerIBD Community Representative
Leanne RavenCEO, Crohn’s & Colitis Australia
Wayne MassugerCrohn’s & Colitis Australia
Hailey FisherCrohn’s & Colitis Australia