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Lived Experience Panel Representatives for the Australian COPD Guidelines

Lung Foundation Australia is inviting people with lived experience of COPD (including patients and carers) to be part of a Lived Experience Panel to help update Australia’s national guidelines.  

These guidelines are used by healthcare professionals across the country. In this role, you will work alongside clinicians and researchers to help shape healthcare recommendations. These recommendations are developed using a structured process (called the GRADE approach), which looks at both research evidence and lived experience.

About the opportunity

The purpose of the COPD-X Lived Experience Panel is to make sure the views and perspectives of people with experience of COPD are included in all aspects of the guideline. The COPD-X Lived Experience Panel will include up to 12 members who will meet for online meetings up to four times a year. To make sure everyone can contribute, panel members are provided with initial training in guidelines and how they are developed, and ongoing support from the COPD-X guideline team and peer support from Lung Foundation Australia’s Peer Support network is provided.

The COPD-X Lived Experience Panel will be in place for the first phase of the guidelines are funded (through to mid-2027) but individual members are not expected to commit for that length of time.

We are bringing together a small group of people from across Australia to share their experiences, perspectives, and ideas. Panel members may be asked to:

• Share what it’s really like to live with COPD
• Highlight what matters most in day-to-day life and care
• Help shape recommendations so they are practical, relevant, and person-centred
• Identify the benefits of treatments (and if they outweigh the variety of costs associated)

You do not need any medical or research experience to take part – your lived experience is what matters most.

What you might be involved in

The COPD-X Lived Experience Panel will contribute to different aspects of the COPD guidelines, including:

• advising on what different topics the guideline should cover and specific questions the guideline should answer
• providing feedback on draft recommendations about specific treatments/care
• discussing what people from different backgrounds might value or consider important when making healthcare decisions for COPD
• offering advice about how and where the guideline should be shared.

Time commitment

• Meetings will be held online (via Teams or Zoom)
• Each session may run for up to 2 hours
• Meetings will take place approximately every 3 months (around 4 per year)
• Members will be sent an agenda and sometimes a small amount of additional material to read before the meeting.
• The panel will run from May 2026 to May 2027 (12 months)

There may be optional opportunities to contribute between meetings. For example, interested members may be invited to join other groups and activities as they are developed, such as other Working Groups, COPD-X-related research projects, and co-presenting at conferences and workshops, and co-authoring publications.

Support, flexibility and wellbeing 

We understand that living with COPD (or caring for someone with COPD) can be unpredictable.

• You are welcome to take breaks, step back, or withdraw from the panel at any time if your health or personal circumstances change
• There is no expectation to participate beyond what feels manageable for you
• We will work with you to provide any support or adjustments you may need to participate comfortably

Your wellbeing always comes first.

Payment

COPD-X Lived Experience Panel members are offered an ‘honorarium’ (payment) as a gesture of appreciation. As a thank you for your time and contribution:

• You will receive an honorarium of $200 for each Lived Experience meeting/workshop attended
• If additional work is requested outside of meetings, this will be discussed with you in advance

Who we are looking for

We are looking for people who:

• Have lived experience of COPD (as a patient or carer)
• Are comfortable sharing their experiences and perspectives
• Are interested in improving care for others
• Can take part in respectful group discussions
• Are comfortable with technology and joining online meetings

Ideally, the Panel will be inclusive and diverse. We welcome people from all backgrounds, including:

• First Nations peoples
• People living with disability
• People from culturally and linguistically diverse communities
• People living in rural or remote areas
• People of all ages and abilities

Training and support

COPD-X Lived Experient Panel members will be supported throughout the process.

• An orientation session will introduce you to the project and what to expect
• Ongoing guidance will be provided, including a simple explanation of how your input is used
• You do not need to be familiar with clinical guidelines, we will guide you through everything

We regularly seek feedback from Lived experience panel members about how we can improve our processes.

How to apply

About application survey and process

• Please complete the survey below.
• The survey should only take a few minutes to complete.
• Your application does not have to be polished or extensive. You are not required to submit a CV. You are not required to answer any questions you don’t want to.

If you are unsure whether this is the right fit or have any questions, we invite you to reach out for a confidential conversation before applying – just email Robyn at [email protected].

Privacy and confidentiality

Your responses will be treated confidentially and shared only with the project team and selection panel.

Please avoid including highly personal information such as your home address.

Next steps

A small number of panel members (up to 12) will be selected to ensure a diverse range of experiences and perspectives from across Australia. All applicants will be contacted with an outcome and next steps.

Contact

For any questions or more information, contact Robyn at [email protected].