Consumer Reference Group

What is the Consumer Reference Group?

The Child and Adolescent Cystic Fibrosis Consumer Reference Group of WA (CF CRG) was formed in April 2015 to support the development of partnerships between consumers, researchers, research organisations and medical staffs. Made up of family members of CF patients, and representatives from Child and Adolescent Health Service (CAHS), Telethon Kids Institute and Cystic Fibrosis Western Australia (CFWA), the group meets once every 3 months. It gives opportunities for consumers to give constructive feedbacks to the clinical team, allows researchers to have better awareness of their research impacts, and for consumers to help guide future research designs.

What have we achieved?

Since the CRG’s inception, meetings have been held quarterly. Overall highlights and achievements have been:

Consumer members have provided feedback on the feasibility of research proposals, study documentation and information sheets.
The CRG has provided input for each research proposal prior to the proposal being presented to the AREST CF Scientific Management Committee (SMC). This has saved time in the approval process and allowed for valuable consumer input into research. This enables research to be tailored to meet consumer needs as well as scientific integrity. Two experienced consumer members attend SMC meetings to add further consumer perspective to the proposal.
We provide input into the annual 'Evening with CF Scientists‘ program where CF related scientific endeavours at Telethon Kids are presented to the broader community.
We disseminate information to the wider community through CFWA and the Parents Facebook Group.
Since 2015 we have advocated to improve the process and time required to fill prescriptions at Pharmacy. Consumers partnered with Pharmacy management to develop a method to reduce pharmacy wait times. Various methods have been trialled and in July 2019 a new CF pharmacy pre‐order service was implemented.

Do you want to join?

Express interest

Join our Consumer Reference Group

Expressions of interest are being invited for our Child and Adolescent Cystic Fibrosis Consumer Reference Group of WA.

We are looking for additional members to join the Child and Adolescent Cystic Fibrosis Consumer Reference Group of WA. It is a formalized group of parents and patients with cystic fibrosis brought together to:

Support the development of partnerships between consumers, researchers, research organizations and clinical staff.
Provide a consumer perspective to both clinical and research aspects of cystic fibrosis.
Advise about research and clinical priorities, practice and policies.
Enhance the quality and relevance of research and clinical activities through consumer participation.

Please see position description for more information.

I really enjoy being a member of the CF CRG. As a mum of a teen with CF, it's really encouraging that my thoughts and input are valued by the researchers and medical team. How exciting to be in the frontline audience for new and upcoming research in the world of Cystic Fibrosis.