How consumers can get involved

As a consumer, you bring a unique view to health services and organisations. Whether you are involved in a committee, attend consultations, help design a research study or fill in a survey, you are contributing to the planning and evaluation of services.

There are many ways you can be involved as a consumer, depending on:

• your knowledge, skills and experience
• your interest and availability
• an organisation’s consumer involvement plan and level of engagement
• current consumer openings at an organisation.

Also see Types of consumer roles.

Health care is a complex area. As a result, change doesn’t generally happen overnight. Consumers can find the pace of change to be a challenge and often have to reorder their thinking to take a ‘long-term view’ of influencing the system.

What you can expect

You can expect to be a part of the team, and to have your views listened to and considered. You will be respected for the knowledge, skills and experience you contribute, but you will not be expected to know everything.

Storytelling is a major aspect of consumer involvement. The stories of ordinary consumers and carers help to bring theoretical problems to life and can be extremely effective in promoting greater understanding and appreciation of their unique concerns.

You might find it challenging to attend meetings, read long documents, provide regular feedback or commit time on an ongoing basis to work on serious issues if you or a family member are not well. But your contribution is still valuable, even if you cannot contribute consistently. Make sure you let people know if you cannot fulfil an expectation, and they can brief you about what you missed when you have more time.

Also see About consumer involvement and Getting started.

Your current skills

As you know, your experience of cancer has put you in touch with cancer services and clinicians. Through these experiences you have accumulated some knowledge about how the health services are delivered, and how people like you access these services. You may have had some of the following experiences:

• a diagnosis with cancer
• in-patient experience (receiving treatment, chemotherapy or radiotherapy; having surgery)
• involvement in a clinical trial or other research project
• palliative care and the process of end-of-life decisions.

Asking yourself some of the following questions can help you work out your current skills and experience:

• Do you have personal experience with cancer?
• Do you have a strong sense of what has worked well in your health care experience and what hasn’t?
• Have you had any previous experience with consumer participation?
• Are you motivated to provide feedback?
• Do you know what kind of skills you have and how you might be able to contribute?
• Do you feel that you understand the important issues that are relevant for consumer involvement?
• Do you have the time and willingness to pursue further training?
• Have you been provided with information about the different types of consumer roles and levels of participation?
• Have you been offered opportunities to write or speak about consumer involvement or participate in conferences?
• Are you in contact with consumer networks and organisations outside the organisation you’re working with, and do you understand their needs and concerns?
• Have you been offered the chance to give or receive mentoring or ongoing support from peers?
• Do you understand the important issues for consumers from Aboriginal and Torres Strait Islander groups or of those from culturally and linguistically diverse communities?
• Do you have any links to consumers from rural and regional communities or to people affected by cancers with particularly poor outcomes?

Answering ‘yes’ to any of these questions suggests you are ideal to be involved in cancer services as a consumer.

Training and gaining experience

It is important that you can connect with more experienced consumers to improve your own skills. There are experienced consumers throughout the sector and consumer organisations around Australia.

If you want to expand or brush up on your skills, you can attend:

• advocacy training
• leadership training
• effective storytelling workshops
• science and specific health background training for advocacy
• conferences.

You may also wish to:

• better understand the Australian health system
• seek programs where consumers mentor other consumers
• learn about, and commit to, self-care strategies.

See Cancer support organisations and the Consumers Health Forum of Australia website for more information on connecting with other consumers and training opportunities.

How you can benefit

There can be enormous satisfaction in making a difference to something very important like quality health care. Many consumers get involved in health services or health organisations as a way of ‘giving back’ to those who have helped them. Others do it to improve services. Still others may get involved because of a negative experience that they don’t want to see repeated with anybody else. 

Most of your involvement as a consumer will be voluntary, but you should be reimbursed for any out‑of‑pocket expenses.