The options for being involved as a consumer include an enormous range of activities. Consumers can participate in surveys and focus groups or consultations. Other participation activities include consumer representation on committees (from ethics committees to patient safety committees), involvement in organisational strategic planning and many aspects of quality improvement.

Some of the main ways that consumers are involved with health organisations and services are:

• service planning
• improving patient care throughout the cancer pathway
• education and information
• service measurement and evaluation
• participation in the research cycle
• policy development
• priority setting.

The way you are involved will depend on several things:

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

What roles are there for consumers?

Types of consumer involvement

Please print text version of the types of consumer involvement

Please print diagram

What knowledge, skills and experience are most useful as a consumer?

‘As a consumer representative, it’s important to move from the ‘I’ to the 'we'. You have to be speaking on behalf of other people.’

—Nicola Bruce, Consumer Researcher

• Consumer knowledge, skills and experience (for consumers)
• Are you a capable consumer?
• Storytelling tips for consumers
• Tips for consumers working on committees

What knowledge, skills and experience do I currently have?

You have lots of knowledge and experience based on your own lived situation as a person affected by cancer, either because you are affected directly or because you look after someone affected by cancer.

This experience has put you in touch with cancer services and clinicians and you have accumulated 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 (as a consumer or carer) and be able to offer comment and advise on quality improvement related to them:

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

It is this personal journey from diagnosis through to survivorship or to end-of-life that consumers contribute when they are asked to provide views as an advocate or an advisor to a health service or committee.

If you are considering working with your health service, you may find it helpful to take a few minutes to consider your skills and motivation using this consumer self-assessment tool and personal stocktake.

How do I further develop the knowledge, skills and experience for these roles?

There are several things that you can do to improve your knowledge and skills. For example, you can attend:

• consumer representative training
• leadership training
• effective storytelling workshops
• science and specific health background training for advocacy
• conferences, and possibly co-author journal articles with staff members.

You may also wish to:

• gain better knowledge of the Australian health system
• set-up regular briefings and debriefings before and after meetings
• seek mentoring programs (where consumers mentor other consumers)
• learn about and commit to self-care strategies.

Information and training for consumers is available. Cancer Australia, the Cancer Council in your state, other cancer organisations and the consumer peak bodies will be able to direct you to many training and education opportunities. Click here for a list of cancer and consumer organisations.

As an involved consumer, what can I expect?

You can expect to be considered part of the team, to have your views listened to and taken into account. You will be respected for the knowledge, skills and experience you contribute, but you will not be expected to be knowledgeable across all areas of discussion in a meeting or project. As any other member of the team would be fully informed, you will also be kept up-to-date about any relevant practical information regarding meetings or changes (time, date and location) and can expect to receive reasonable lead-time on any pre-reading. You can also expect to have a support person or mentor from within the organisation available for briefings before and after meetings, if necessary. Here is a list of some of these practical expectations for consumer involvement.

The health service or organisation that you are working with will have a series of policies developed for working with consumers. These are particularly important for those consumers working at the levels of partner, expert and advisor. Take a look at some of the policies you can expect from your organisation.