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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.

Subscribe to “Your Blood Cancer News” to keep up-to-date with what’s going on in the world of blood cancer research and support.

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

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.

Check back later for future activities.

Participate in a support services program or event

The Education team is facilitating a July webinar themed around Returning to Study. (posted May 27, 2024)

In this webinar they are trying to highlight some of the common issues and potential strategies for resuming study. The webinar will also feature a presenter Occupational Therapist with experience working in the young adult population.

They are looking for a consumer who has had experience trying to return to study after a blood cancer diagnosis & treatment. If you are willing to be recorded and share some of your patient journey as it relates to this topic, they would love to hear from you.

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

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:

  1. be over or at 18 years of age.
  2. 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 June 5th, 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.