Opportunities to share your lived experiences

Our Digital Health team is developing a new, accessible digital health and wellbeing platform with evidence-based information and resources to support people living with and beyond blood cancer treatment.

They are looking to understand how people with lived experience prefer to receive information and participate in future engagement opportunities.

Please note: If you have already been involved with the Digital Health team through a recent interview, questionnaire or other feedback activity, you do not need to complete this questionnaire. The team is already connected with you and will contact you directly regarding this opportunity.

For those who haven’t previously connected with the Digital Health team, we’d love to hear from you. Your feedback will help ensure future engagement approaches are accessible, inclusive and responsive to the needs of the blood cancer community.

Have you experienced challenges accessing the medicines you need?

Medicines Australia is seeking people with lived experience to share their stories as part of its Missing Medicines Campaign, highlighting the real impact of medicine access on Australians.

We’re interested in hearing from people who:

✅ Have experienced barriers, delays, or challenges accessing the medicines they need

✅ Require medicines that are not listed on the PBS, are unavailable in Australia, or are otherwise difficult to access

✅ Currently have access to the medicines they need but have concerns about maintaining access in the future

Participants may be invited to take part in a short phone interview, with some opportunities for campaign photography and media engagement. Melbourne-based participants are particularly encouraged to apply; however, expressions of interest are welcome from across Australia.

💙 Your story could help advocate for better access to medicines for all Australians.

⏰ This is a time-sensitive opportunity. If you’re interested, please send an expression of interest to Danielle by mid next week.

📩 Danielle Jackman
[email protected]

Help co-design a new digital platform to support cancer recovery and manage cancer-related fatigue.

✅ Eligible if you are: 

• A blood, breast, prostate or colorectal cancer survivor who completed primary treatment within the past 5 years and have experienced moderate to severe fatigue (ongoing hormone suppression or maintenance treatment is OK) 
• An informal carer who currently provides, or has provided within the past 2 years, unpaid care to an eligible survivor

⏰ Commitment: Approx. 10 hours over 6-8 months (4 online workshops, surveys and platform testing)

💳 Thank you payment: Up to $370 in gift cards

📧 Register interest: [email protected]

Help inform our submission to an Australian Government parliamentary inquiry by sharing your experiences of: 

• Diagnosis delays 
• Specialist wait times 
• Out-of-pocket costs 
• Travel expenses

🗓️ Available sessions (AEST): 

• Thu 24 Sept, 9:30am 
• Wed 30 Sept, 5:00pm 
• Tue 6 Oct, 11:00am

🔗 Register here: https://forms.cloud.microsoft/pages/responsepage.aspx?id=apYKc-zE0Ui7gAehhB6fo9i60Q9RMntKhSFen3pWOV…

If these times don’t suit, please let us know and we’ll explore other ways to contribute.

The NHMRC-funded OPTIMAL Centre for Research Excellence is seeking people to participate in a research project exploring how immunoglobulin (Ig) therapy can be delivered more effectively for people living with blood cancer.

They are looking to speak with:

• People with lived experience of blood cancer who have received intravenous immunoglobulin (IVIg) or subcutaneous immunoglobulin (SCIg) therapy
• Family members, friends, or carers who have supported someone receiving Ig therapy

The study involves a single 30-60 minute interview, either via Zoom or in person, with participants receiving a $55 electronic voucher in recognition of their time.

Researchers are interested in understanding what works well, the day-to-day challenges people face, and where access to Ig therapy could be improved. While Victorian participants are particularly encouraged, people from anywhere in Australia are welcome to participate. Interviews are expected to commence in late October.

Advertised on behalf of the Walter and Eliza Hall Institute of Medical Research (WEHI), this opportunity is seeking people affected by blood cancer, as well as carers and family members, to partner with researchers and help shape future blood cancer research.

WEHI is particularly interested in hearing from people with lived experience of:

• Lymphoma, Non-Hodgkin Lymphoma, Acute Myeloid Leukaemia (AML), Acute Lymphoblastic Leukaemia (ALL)
• Clinical trials, experimental therapies, or immunotherapies
• Quality-of-life impacts associated with blood cancer and its treatment

Consumer Partners help researchers improve study design, strengthen grant applications, and ensure research remains focused on what matters most to patients and families.

⏱️ Commitment: Introductory training plus approximately four 1-hour meetings per year with a researcher, along with occasional opportunities to review materials and provide feedback.

No scientific or research background is required, and training and support are provided.

Researchers are seeking participants aged 60+ with a cancer diagnosis, as well as caregivers/family members of older adults with cancer, to complete a survey about how cancer may affect thinking and memory.

What’s involved?

• Online survey (approx. 20 minutes)
• Completed on computer or tablet
• $20 grocery voucher provided
• Optional follow-up interview opportunity

On behalf of the research team at Deakin University, I’m sharing an opportunity for those with lived experience of blood cancer (18+) to participate in an important study.

🩺 What’s it about?
Exploring people’s experiences with needles in medical procedures to help develop painless alternatives.

⏱️ What’s involved?
* 10–15 minute online questionnaire
* Completely anonymous (no names required)

👉 Take part here:
https://redcap.link/needleexperience

If this resonates with you—or someone in your network—please consider participating or sharing. Your voice can help shape better patient experiences 🙏

📧 If you have further questions, please contact: [email protected]

Our European network partners (via the Acute Leukemia Advocates Network) have asked us to share an international survey exploring sleep quality in people living with blood cancers.

Sleep issues are often raised but under‑recognised, despite their impact on daily functioning, treatment tolerance, and quality of life. The survey aims to gather patient‑reported data to strengthen advocacy and improve care discussions globally.

If relevant to you (as a patient or caregiver):

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.

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.)
2. Supporting Blood Cell Recovery
   • Focused on helping patients during and after cancer treatment, including stem cell transplants.
3. 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]

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.