Consumer Representative - Toolkit

Research happens in NICUs across Australia, and around the world. Every trial that happens within Australian NICUs has gone through very strict protocols and guidelines, had input by NICU parents and has undergone independent ethics approvals. 

There is an underlying understanding that the care our babies receive today is available as a result of others before them taking part in research and that those who participate in research contribute to improvements in standards of care and long-term quality of life. 

The importance of having Consumer Representatives in research is integral to improve best practice. 

What is a Consumer Representative? 

A consumer representative for Miracle Babies Foundation actively works with researchers and research organisations.  Those who have a lived experience or close connection with the NICU/SCN environment can help design and shape research projects and priorities from a consumer perspective. 

What is involved in being a Consumer Representative? 

This will depend on several things. The following are common areas where consumers are asked to share their thoughts: 

• Their personal story or connection to the NICU/SCN. 
• The researchers’ ideas and plans for their research. 
• The information that has been written to publicise the project, or to inform people taking part, communication tools or to share the final results.

Some examples of consumer involvement include: 

• Attending meetings in person or online with research teams, other consumers and medical professionals 
• Joining a consumer group run within a research organisation and working with them to give your views on different projects 
• Defining and prioritizing research questions  
• Helping design and deliver the research projects and surveys  
• Improving the content and readability of participant information into parent language 
• Reading and reviewing funding proposals 
• Preparing study processes and findings to go onto social media and website 

Some meetings may be in person. Some may be held over the phone or online. You will often be able to work in a way that suits you best, choosing roles that match your lived experience. You can do as much or as little as you want and can always say ‘no’ if what is being asked of you feels too much. 

Why get involved in research? 

• To use your own experience, to help improve or change current procedures or care 
• To give something back to the health system 
• To help improve others experiences 

How much time would I need to give? 

We will match our consumer representatives according to their experiences and the time you have available. But most projects will require 10 hours a year of your time as an example; this could include meetings and completing documentation, reviewing grant proposals etc.  

What Qualifications and Experience is required: 

All consumer representatives will need to meet the volunteer requirements of Miracle Babies Foundation.   

Miracle Babies Foundation Consumer Representatives will have had a baby who has been an inpatient in a Neonatal Intensive Care Unit (NICU) or Special Care Nursery (SCN), themselves spent time at birth in a NICU or SCN or have a close family or linked experience to the NICU/SCN. 

All approved volunteer consumer representatives will act in accordance with individual hospital policies and procedures and sign confidentiality agreements as required. The registration process will require both a valid Police Check and Working with Children check.  

How to get involved? 

REGISTER HERE

Training 

Full training will be provided and will include a Miracle Babies Foundation Induction and Orientation and the following courses to Consumer Introduction:  

https://cciprogram.org/events_training/cciprogram-e-course-online/ 

https://training.telethonkids.org.au/courses/consumer-introduction/ 

Both courses will provide a completion certificate which is to be provided to Miracle Babies Foundation. Once completed, please email to: [email protected] 

There may be other training either in person or online at other times when required.  

Mentoring and Ongoing Support 

Miracle Babies Foundation have a Consumer Mentoring Program to help build the capacity of consumer representatives engaged in the organisation.  Meetings will be held monthly or bimonthly, depending on the amount of current projects. 

You will be assigned a mentor who will be your contact throughout your research project and ongoing. 

For some there may be times when a project or situation could be a personal trigger.  Miracle Babies Foundation NurtureProgram Support Team are available to debrief and support our consumer representatives as needed through our 24 hour support NurtureLine on 1300 622 243.  All consumer representatives are also able to access our Employee Assistance Program (EAP) for further support.  

Reimbursement  

Miracle Babies Foundation Consumer Representative is a voluntary position, but funding may be available for reimbursement of costs of public transport expenses or parking expenses. 

Some projects will be able to offer financial renumeration to consumers, each project will differ. 
A guide to consumer reimbursements and fees can be found on links below: 

https://www.hcnsw.org.au/consumerresearcher-reimbursement/ 
https://involvementtoolkit.clinicaltrialsalliance.org.au/toolkit/undertaking/reimbursing-consumers/ 

Cosumer Representative Role Description

Useful Links 

Clinical Trials Alliance – Toolkits for Consumer Representatives  
https://involvementtoolkit.clinicaltrialsalliance.org.au/ 

LANGUAGE GUIDE for Consumer and Community Involvement in Health Research 
https://cdn.sydneyhealthpartners.org.au/wp-content/uploads/2023/03/CCI-Language-Guide.pdf