Requests for consumer input

The focus for this review is the ‘on-boarding experience’ for those newly joined consumer representatives and the documents / protocols / required readings once registered.

On your own time, if you are willing to review some of the new ‘induction /on-boarding documents now drafted and provide your comments / suggestions this would be much appreciated.

Time investment estimate: 30-45 minutes

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

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)

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.

Check back later for future activities.

This Committee guides the direction and delivery of the Education and Support Group Program throughout the year.

It is a blended Committee comprising both staff members and consumer representatives like yourself.

The Committee meets up every 8 weeks on Zoom video call.

Ideally, you can commit for calendar years 2025-26.

This is a call-out from our Podcasting team. They are looking for expressions of interest from those individuals open to recording for an episode for an upcoming ‘Parenting and blood cancer’ theme. In other words, the team would love to speak with a parent about their experience looking after a child with blood cancer.

This recording activity can be completed from your home.

However, some type of microphone will be required for this engagement.

This is a call-out from our Education team. They are looking for expressions of interest from those individuals open to becoming peer facilitators for some of our other Online Support Groups that we run here at Leukaemia Foundation: i.e. Men’s / Carers / Watch and Wait / General

The selected individuals will be on-boarded and trained up so as to perform this facilitator role.

If you have previous experience as a facilitator or similar skill set from previous line of work, this would be advantageous.

This is a call-out from our Education team. They are looking for expressions of interest from Parents/ Caregivers of a child previously diagnosed with blood cancer OR if you were previously diagnosed with blood cancer as a child/teen and you can pass along this call-out to your parent(s) to see if they are interested in participating in a small group focus panel or 1:1 exchange of information with our Education team.

Those persons interested in participation can expect our Education team to be in touch and set up a date/time to engage in a Q & A session to understand Parents’ support needs more fully in order to deliver a more targeted webinar/ seminar for our program.

They are seeking 2-3 consumer representatives from regional/ remote Australia or someone from a First Nations background to review their grant study proposal, which is a reimbursed activity.

Time estimate: 30-45 minutes.

You will receive their study proposal documents via email and need to read through the document and provide feedback as you see fit given your lived experience.

Seeking those patients (and caregivers) who have had at least 1 line of treatment to interview 1 hour on Zoom and honorarium payment included.

Commencement of interviews happening late February.

How can you help?

They would love to hear your thoughts and experiences and understand what matters most to people during their cancer journey.

You can choose how you would like to participate:

• Focus groups: a small group discussion where you can share your opinions and hear
  from others.
• Interviews: a one-on-one conversation where you can speak more personally about your
  experience.

Both options will be guided by experienced facilitators and designed to ensure a safe and comfortable environment for all participants.

If you are interested in participating, please complete the registration form at the following link:

Are you undergoing cancer treatment or surveillance, or those who have recently completed treatment?

The survey aims to gather data on the out-of-pocket costs that people have incurred during their care, including the direct and indirect costs, including the cost associated with their changing financial circumstances. It is designed to be brief and should take no more than 30 minutes to complete. The outputs of this research will be used by Cancer Council Australia in our policy and advocacy work to reduce the impact of the financial cost of cancer in Australia.

Do you have a lived experience of cancer, or have you supported someone through their cancer journey? Do you live rurally or remotely?

You could play an integral role in improving cancer experience and outcomes across rural and remote Australia with researchers at Deakin University.

The program will bring together and encourage the voices of a diverse group from all over Australia. Why not make yours one of them?

Expressions of interest close 20th December 2024.

If you are passionate about improving health services for consumers from culturally and linguistically diverse backgrounds, please see the link below that will take you to the survey anonymously. No personal information will be recorded or collected. This survey will take approximately 10 minutes to complete.

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:

We are advertising on behalf of the McGrath Foundation. Their project seeks to co-design a model of care that will guide the way supportive cancer care is delivered by the McGrath Foundation’s all cancer nurses. This project will extend the high level of care and support, traditionally offered by McGrath Breast Care Nurses, to benefit people with other forms of cancer.

Why participate?

• Shape the future: The opportunity to design a model that meets the needs of those receiving and delivering supportive cancer care in Australia.
• Be empowered: Experience increased empowerment by being part of the model design and having your voice heard.
• Gain and share knowledge: Learn about the latest in supportive cancer care and connect with others with an experience of cancer.
• Improve your own experience: If you are likely to have a longer-term experience with cancer, you may benefit from the McGrath Model of Care for all cancer and enhanced access to supportive care.
• Compensation for your time: If you attend workshop.

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:

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

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

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:

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.

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)

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).

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.