Use your cancer experience to help guide research

We define consumer engagement as the means by which consumers, communities and other stakeholders are involved in the decision-making processes affecting the delivery of healthcare and research.

A good way to think of it is work that is done ‘with’ or ‘by’ consumers, rather than ‘to’ or ‘for’ consumers.

You might also hear consumer engagement referred to as ‘consumer involvement’, ‘consumer participation’, ‘public and patient involvement’ or similar terms.

The term ‘consumer’ is commonly used by medical research funding bodies and hospital accreditation bodies to describe all current, past or potential users of a health service, including their carers and family.

In most cases, the people who collaborate with us are people who have had cancer, or their family or carers.

In these volunteer roles, you will be matched with a researcher working in an area of cancer that is relevant to your experiences. Every role is unique, but the type of activities you might be asked to undertake include:

• Talking to a researcher about how treatment impacted you, so they can better understand the human impacts of their work
• Helping a researcher understand the priorities of people impacted by your type of cancer
• Connecting with other people who have experienced cancer, so that you can be mindful of a broad range of views
• Helping a researcher to explain their work in a way that is easy to understand
• Assisting researchers to prepare funding proposals for cancer research
• Asking researchers questions about how their work gives consideration to people who are different to you (older, younger, living remotely, of a different cultural background, impacted by multiple illnesses, etc)
• Participating in a steering group to help monitor and guide research.

Collaborating on our research with people impacted by cancer has a very wide range of benefits. Some of these are:

• Informing research with input and advice from people with experience of cancer
• Ensuring researchers are deeply connected to the human impact of their work
• Increasing our success in securing research funding through competitive grants
• Improving the ways we communicate our research
• Increasing transparency in how we make decisions

We’re looking for people who:

• Have experienced cancer themselves, or cared for a person with cancer
• Can consider a broad range of cancer experiences and perspectives, as well as their own
• Are keen to learn about research
• Are comfortable talking about cancer experiences (including their own), and also comfortable providing feedback to researchers.

Every partnership is unique and time commitments will vary. On average, you can expect your partnership to involve a meeting with your research partner every few months, and some occasional email collaboration. Although most meetings are held during business hours, some projects can accommodate after hours meetings.

While some projects are short ones, other collaborations can last years. We’re mindful that your priorities and health can change over time, and there is no obligation to continue if it no longer works for you.

While these collaborations are very important, your contact with the researcher is likely to be fairly infrequent. The major reason for this is that research takes time. For example:

• The time between a funding proposal and a funding outcome can be many months
• It can take long periods to run experiments or review data

It’s good to go into these collaborations knowing that they can be slow moving. But they also have a lot of impact!

You could be involved in any stage of our research cycle. A researcher might ask you to be involved in:

• Helping them prioritise which research to do
• Informing how they shape their research questions
• Informing how they plan their research project
• Contributing to a research funding proposal
• Considering how they implement a project
• Monitoring a project
• Evaluating and reporting on a project
• Sharing the results
• Determining follow up research questions

The number of researchers collaborating with people like you is rapidly growing. This means that while some researchers have lots of experience in consumer engagement, many are at the early stages. Our researchers will be keen to hear your perspectives on what’s working well in the collaboration, and what we can do better.

Both you and the researchers you work with will be supported by our Consumer Engagement team to learn and develop in your collaboration, so that we can make sure it’s as impactful as possible.

In most cases, it’s easy to collaborate from home (using remote collaboration tools like Zoom). So we’d love to hear from you, no matter where you live.

No. All experiences of cancer are important to our research.

For our consumer engagement volunteer roles, there are no limitations on whether people currently undertaking treatment can participate. However, important questions you should ask yourself before volunteering are:

• Do I have the time and energy needed?
• Can I attend meetings and review documents?
• Will I be comfortable having conversations about cancer (including your own cancer experiences, or conversations about cancer survival)?
• Am I able to consider not just my own cancer experience, but also the experiences and perspectives of others?
• Will participating negatively impact my wellbeing?

It’s also important to remember that these collaborations will not alter your treatment plan, or impact access to different treatments or clinical trials.

Researchers are not able to comment on an individual’s care.

The process looks like this:

1. Register your interest via this link (you just need to provide your name and contact details).
2. You will be invited to apply to join our Consumer Register. Our Consumer Register is a group of people who have volunteered to collaborate on our research projects, or projects related to clinical care at Peter Mac.
3. We will contact you for a short, informal interview.
4. When your application is approved, you’ll be provided training.   
5. You’ll receive regular information about collaboration opportunities, for which you can volunteer.  
6. When you’re matched on a project, our Consumer Engagement team will support you to get started.    

Yes. It’s important that projects are a good fit for you and that both you and the researcher have a comfortable working relationship.

You will be able to select projects of interest via our Consumer Register newsletter.

We’d love you to! When you join our Consumer Register, you’ll be invited to collaborate on both research projects and projects that impact the care and services we provide.

Our consumer engagement team will support you to get started in your collaborations, and will also be available to you and your collaborators if you have questions along the way. You will also have access to training and events.

The most effective way to have issues or problems related to clinical care addressed is to contact Peter Mac’s Consumer Liaison. Learn more about our Consumer Liaison.