Get involved Consumer group Requests for consumer input

Requests for consumer input

Have your say, share your experiences, or try out something new

As part of our Blood Cancer Consumer Engagement Group, we’re continuously finding opportunities for people living with blood cancer to contribute to the design and delivery of our services.

Below are current requests for consumer participation and advice.

Click on the opportunity that appeals to you, and fill out the required information. This will be sent through to our Consumer Engagement Coordinator, who will be in touch within three business days if we can progress beyond your expression of interest.

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Are you aware of our WhatsApp Group?

We rolled this feature out in early 2024 and highly recommend you join our WhatsApp Group as a member of the CE Group. The WhatsApp community group provides the best way to stay informed of our consumer activites emerging in real time and catch any important announcements. As for security considerations, we keep it anonymous and your phone number does not get shared.

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Provide feedback on our services and your experiences

Review Leukaemia Foundation disease information booklets (ON HOLD)

Our health literacy team is looking for people living with blood cancer to review our disease information booklets. (ON HOLD)

Our digital health team is looking for consumers to test our newly released Online Blood Cancer Support Service (posted July 19, 2023)

We would appreciate your feedback and any thoughts on how to improve the service. Time investment: ideally spending 30-60 minutes perusing the platform. (ON HOLD)

Participate in an interview for the media or a marketing project

‘Flying Doctor’ Podcast- We have teamed up with Royal Flying Doctor Service (RFDS) for this activity and looking for someone who received a RFDS service or utilised one of their resources during diagnosis or treatment journey (posted July 16, 2024)

If you are interested in this activity, we will forward your name to the RFDS team for consideration.

We estimate a 1–2-hour hour time investment in order to capture your story on the recording for the future podcast episode.

Our social media team is looking for those living with blood cancer and connections with particular sporting themes (posted June 5, 2024)

Our social media team is looking for those living with blood cancer and connected to any of the following themes:

Are you a passionate rugby fan?
Are you a passionate AFL supporter?
Have you ever represented Australia at Olympics or Para-Olympics?

If interested, we will connect you with our social media team and they will request some pics/video of yourself to do with the theme.

This will lead to you being showcased on our social media channels in the future.

Share your experience with using Leukaemia Foundation transport services (posted Dec 8, 2022) ON HOLD

We’re looking for someone to share their experiences with using the Leukaemia Foundation transport service. Ideally, this story could be shared with Bridgestone, one of our transport program supporters, so they can demonstrate the impact of the program to their wider organisation.

Spokesperson opportunities

Check back later for future activities.

Participate in a support services program or event

The Education team is facilitating an August webinar themed around ‘Returning to Work’ (posted July 16, 2024)

They are looking for a consumer who has had to manage challenges returning to work due to symptoms of their blood cancer or needed to change duties or career or may have used supports or services to get back into the workforce.

Keep in mind, if you are wanting to participate but the date for webinar conflicts with your schedule, the team is willing to pre-record your story prior to the session.

Become an advocate

Our Advocacy team is wanting to petition Gov’t in a few areas based on your feedback. If you or your loved one can speak to any of these advocacy themes based on your blood cancer patient journey, our team would appreciate your summary quotations (posted July 24, 2024)

Please email [email protected] your summary comments (no more than 2-3 paragraphs per theme please)

‘inequitable outcomes faced by non-metropolitan patients’
‘Trouble accessing affordable new treatments and diagnostics’(eg new drugs, CAR T etc.)
Positive or negative experiences accessing genomics (particularly not being able to access it, or positive results from it)
Challenges in navigating the healthcare system

We received a call-out from the University of Sydney research team. ‘Have you been diagnosed with chronic leukaemia? (posted (July 24, 2024)

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.

To find out more and participate

We were approached by the Mater Research Health Consumer Network (MRHCN). Their research team is advertising to join their network regardless of where you live in Australia (posted July 16, 2024)

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:

Health Consumer Expression of Interest form

We are advertising on behalf of Infectious Diseases Society of America (IDSA) who are seeking patient representatives for an ongoing guideline project. (posted May 27, 2024)

They are working on a guideline focused on Aspergillosis. This guideline holds particular significance given the intricate connection between Aspergillosis and conditions such as leukemia. Individuals with leukemia, especially those undergoing chemotherapy or stem cell transplants, are particularly susceptible to invasive aspergillosis, a severe form of the infection.

They are forming a panel which meets semi-regularly and this will allow them to incorporate diverse perspectives, including those of patients, into their guideline development process.

Please send through your EOI and we can provide you with more information around this activity.

We are advertising this on behalf of research team at the University of Sydney, conducting a study within the Psycho-Oncology Co-operative Research Group. They have developed a new questionnaire which aims to assess concerns associated with living with cancer. It involves an initial 30-minute questionnaire and an optional 5-minute follow-up survey two weeks later. Participants are also given the option to participate in a 30-to-40-minute telephone interview. (posted on March 27, 2024)

To be eligible, people need to:

be over or at 18 years of age.
have been diagnosed with cancer in the last 10 years (this can be a first diagnosis or a recurrence). People who haven’t undergone any treatment are still eligible if they met these two criteria.

Researchers from the Australian Institute of Health Innovation, Macquarie University are looking for patients from CALD (culturally and linguistically diverse) backgrounds with cancer OR their carers who have used cancer services or palliative care services in Australia in last 5 years to participate in a 30–40-minute interview study (posted Sept 27, 2023)

Interviews will be scheduled at a time convenient to you and can be conducted either face-to-face or via phone or online. The aim of this study is to understand barriers and facilitators for quality end-of-life care planning for people from CALD backgrounds accessing cancer services.

Complete an online questionnaire (15 minutes)
Participate in a telephone interview (40-45 minutes)

Looking for consumers who were caregivers for childhood cancer survivors. (posted Aug 28, 2023)

A call-out for those consumers who cared for cancer survivor now aged 12-18y/o, in remission and finished treatment min 6 months ago and max 5 years ago. The research team is requesting survey to be completed (15 min).

Leukaemia and lymphoma patients, both current and past: participate in a PhD project (posted Mar 22, 2023)

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.

Consumer Opportunities by Region:

WA: Looking for consumers (including loved ones) and work in mining industry and their patient journey is connected to this industry. (posted Aug 28, 2023)

Our Business Partnerships team has a line of sight to partner with mining companies in WA and would like to share a blood cancer journey story connected to mining industry which could end up being disseminated across mining companies internal channels.

Last updated on July 24th, 2024

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.