Requests for consumer input

We’ve drafted the Lived Experience Engagement Program (LEEP) Strategy for the next three years and want your input before finalising it.

💻 Join an online Strategy Consultation Discussion in the second week of September (evening) to share your thoughts.

📧 Interested?

The Greek Herald is running a feature and would like to speak with someone from the Greek community who has experienced blood cancer.

👉 Ideally a female with Greek background, but open to anyone with Greek heritage.

📞 Involves a short phone interview and providing a photo.

📧 Interested?

Check back later for future activities.

Dr Charlotte Tottman will present on the mental health impacts of blood cancer on relationships (partners, children, colleagues, friends).

👉 We’re looking for someone who has navigated mental health challenges (e.g., anxiety, depression), and found new ways to relate to people in their life and is willing to share their story as part of this webinar.

If the date of webinar does not suit, you can also submit a pre-recording to be played on the day.

📧 Interested?

The University of Southern Queensland is running a pilot study to better understand and support unpaid cancer caregivers in regional, rural, and remote areas of Queensland.

If you’re caring for someone with advanced cancer, you’re invited to take part in a short 20-minute online survey. Your feedback will help shape a peer support model that truly reflects caregivers’ needs.

The University of Sydney is conducting the Lymphoma Voices PROgram to improve how health surveys capture the impact of treatment on daily life.

If you’ve been treated for any subtype of lymphoma, you’re invited to complete a 20-minute anonymous survey. There’s also an optional follow-up interview if you’d like to share more.

Have you experienced serious illness or received palliative care? Join Voices for Palliative Care and share your story. Together, we can advocate for improved end-of-life care and support others facing similar challenges.

👉 Members will:

• Connect with others who understand their experiences
• Contribute to health research in palliative care
• Share insights to shape future palliative care policies and practices

💰 Members are offered remuneration for their time.

🔗 Interested?

Are you interested in immunoglobulin use and clinical research?

The OPTIMAL CRE team is hosting their first-ever Open Meeting, bringing together patients, clinicians, and researchers to explore key challenges and innovative approaches to improving immunoglobulin use.

🧬 Topics Include:

• Evidence gaps in immunoglobulin use for blood cancers, myasthenia gravis, and Kawasaki Disease
• Understanding patient preferences
• Optimizing dosing and delivery
• Health economics in immunoglobulin research

📅 Why Attend?

This is a unique opportunity to hear from experts, share your perspective, and help shape future research directions.

📄 View the Provisional Program & Register:

https://www.optimalcre.org/general-8

Researchers from Deakin University are inviting people with a cancer diagnosis to take part in a short online survey (approx. 25 minutes) exploring the impact of cancer on bone health.

👥 Who Can Participate?

• Aged 18 or over
• Currently receiving or have previously received cancer treatment

💡 Why Get Involved?

• Help improve understanding of bone health challenges in cancer care
• Support future improvements in post-treatment support
• Share your lived experience and insights

📝 What’s Involved?

A one-off online survey about your cancer experience, bone health, lifestyle, and medications.

🔗 How to Participate:

Professor Louise Purton and her team at St Vincent’s Institute of Medical Research are inviting people with lived experience to help shape their blood disorder research.

They are looking for at least two consumers per research area – and more are welcome!

🔍 Choose from 3 Research Areas:

1. Myelodysplastic Syndromes (MDS)
   • Helping improve treatments and understanding of MDS.
     (Also relevant for people with MPN.)

1. Supporting Blood Cell Recovery
   • Focused on helping patients during and after cancer treatment, including stem cell transplants.

1. Bone Marrow Failure Syndromes
   • Researching conditions like acquired aplastic anaemia and long-term low blood counts after transplants.

💬 Share Your Story
You can meet the research team (online or in person) to talk about your experience and help them understand the real-life impact of their work.

⏱ Time Commitment

• Story sharing – ~1 hour, whenever suits you.
• Research input – 6–12 hours over 2 months (during grant writing).
• Optional ongoing – Quarterly check-ins (1 hour each).
• Optional public involvement – Help promote the research (e.g. interviews, photos).

🌏 Open to All Australians
You can join from anywhere in Australia – meetings can be virtual or in person.

Interested?
Email Professor Louise Purton at St Vincent’s Institute and mention you heard about this through the Leukaemia Foundation: [email protected]

A call-out from The Kids Research Institute Australia, alongside the National Health & Medical Research Council (NHMRC) and Consumers Health Forum of Australia (CHF), they are asking for your feedback on the Draft Statement on Consumer and Community Involvement in Health and Medical Research.

Express your interest to join one of the 23 roundtables being held across Australia to give your input. It’s a valuable opportunity to help shape the future of health and medical research by sharing your voice and experiences.

They are inviting you to share your feedback.

They’re working to make test results clearer and easier to understand. Take a moment to explore a test that matters to you and complete their quick one-minute survey.

Ethics Approval Number: S252054

The University of the Sunshine Coast is conducting research into the financial strain experienced by AYA survivors of leukaemia. This study explores how financial toxicity impacts education, employment, income, coping strategies, and financial support systems.

You are eligible if you are aged 18 or older and were diagnosed with leukaemia between the ages of 15–24 while living or working in Australia.

Researchers at Cancer Council Victoria are inviting 1–2 consumer engagers to contribute to a study focused on blood cancers (including B cell lymphomas, multiple myeloma, AML, and mantle cell lymphomas).

They’re seeking help with:

• Co-designing aspects of the study using lived experience
• Guiding research through patient input
• Developing accessible and relevant dissemination strategies

Time commitment is minimal (1–2 meetings per year). Consumers can be located anywhere in Australia.

Here is the link to the research team to send through your EOI: [email protected]

Are you living with Chronic Lymphocytic Leukaemia (CLL)?

The European Research Initiative on CLL (ERIC) is conducting a global survey to better understand what truly matters to people living with CLL when making treatment decisions.

Your input will help shape future care models, research priorities, and policy decisions.

They offer education tools designed for the people who often want to help but don’t know how – family, friends, neighbours, and community.

They are seekng your feedback on their service by taking their survey or joining a Focus group.

To learn more, click here.

Who can take part?

Any adult living in Australia who:

1. currently has cancer
2. has had cancer in the past
3. is the primary carer for a person with cancer
4. has cared for someone who had cancer who has died

The survey takes about 20 minutes to complete, answers can be saved to continue later, and all responses will remain confidential and anonymous.

To find out more, click below link:

• The questionnaire is about body image in this group, and the intention is that the results could help in the development of resources to help improve body image among those who need this support.
• The questionnaire could take between 30 minutes- an hour to complete depending on your answers, and includes questions about you, your body image, strategies you may have used to improve your body image and your views on ones you haven’t tried.
• Although this study is based in the UK, the researchers are interested in the views of young adults living with and beyond cancer from across the world.

You may be eligible to take part if:

• You are a carer to a person who has ever received a diagnosis of cancer
• You are a person with cancer or a cancer survivor, with a carer who is also willing to participate.

Participation involves:

• Completing between 4 – 9 online surveys (5- 20 mins each) over a period of 12months.
• Carers may complete an online mental health support program (approx. 1hour per week for 6 weeks)
• Participating cancer patients/survivors will complete questionnaires only.

Mater Research has partnered with Jessica Taylor, an experienced consultant with a passion for health consumer advocacy and lived experience of endometriosis, to develop training modules to facilitate capacity building to enable members of the Mater Research Health Consumer Network to form effective partnerships with researchers, clinicians, healthcare providers and others.

The plan is to make the training modules (once co-designed and developed) accessible to members of the Mater Research Health Consumer Network and beyond to increase consumer capacity and capability.

We are advertising on behalf of Peter MacCallum Cancer Centre. If you have Lymphoma or Leukaemia lived experience and received chemotherapy or chest radiotherapy more than 5 years ago and 40y/o or older AND live in Melbourne, Geelong or Hobart area, this may be for you. (Cardiac failure assessment study)

There will be 3 visits over a 12-month period. Each session will take between 1.5–2.0 hours. Testing will include:

• 6 minute walk test
• cardiopulmonary exercise test
• echocardiography (heart ultrasound)
• blood tests
• questionnaires.

You will receive the results of these tests.

If interested in joining this study, click here:

If you have experienced memory or attention issues following treatment, and interested in being interviewed by a researcher from Univ of Adelaide, simply click the link below for more information about getting involved:

We would like to hear from you. We invite you to take part in a study to better understand the experiences of people living with chronic leukaemia in Australia.’

This study may be suitable for you if you:

• Are at least 18 years old
• Have been diagnosed with Chronic Lymphocytic Leukaemia or Chronic Myeloid Leukaemia
• Are at least 12 months post diagnosis

This study involves a brief online survey (~5 minutes) and an interview (30 to 60 minutes) to explore your experiences. Your taking part in this study will help inform how we can better support people living with chronic leukaemia in the future.

One of their consumer partnership research programs involves preventing and fighting cancer.

Click below to direct send through your Expression of Interest (EOI).

‘Are you a patient or support person who is interested in helping shape the way we conduct health research studies and clinical trials? If so, the MRHCN wants to hear from you.’

To send your EOI directly to their team:

A call-out for those who have ever been diagnosed with leukaemia or lymphoma. The University of Sydney research team is seeking patients to interview for their PhD project.

Check back later for future activities.