I have experience

How will the Framework change my involvement as a consumer?

By offering support and a clear pathway to consumer involvement for organisations and consumers, the Framework will improve your experience. As the Framework provides ideas and examples of how others have worked with consumers, this may be inspiration for new ideas and avenues of involvement both for you and your organisation.

What one consumer organisation thinks of the Framework

‘I think the Framework and the whole project that Cancer Australia has led is really important because it provides guidelines for people on how to do it. Because the guidelines are being developed and people are thinking about it, then the next step is that people start learning how to engage with consumers and so it’s not the big unknown that it always seems to have been.

It’s actually a well-defined process. The role of the consumer representative is well defined. When consumers are recruited into an organisation for a particular role and go through an induction process, they understand what is expected of them and what is not expected of them. So it really helps to define the process and manage the expectations.

Because part of the fear, I think – and there has been some fear associated with consumer representation – is because it hasn’t been well understood what the role of the consumer representative is.

I think the whole Framework process and the development of the toolkit is really helping to clarify that for everybody.’

—Anna Williamson, Head, Research and Advocacy, The Leukaemia Foundation 

Although I have experience, remind me of the ways that I might be involved?

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 levels of participation 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 services are:

  • service planning
  • improving patient care throughout the cancer pathway
  • education and information
  • service measurement and evaluation
  • research
  • policy development.

The way you have been involved, and will be in the future, depends 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.

Remind me what I can reasonably expect from my health service or organisation?

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 hopefully 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.

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

What knowledge, skills and experience do I currently have?

‘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

As you know, your experience of cancer has put you in touch with cancer services and clinicians through which 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 (as a consumer or carer), and be able to offer comment and advice 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
  • palliative care and the process of end-of-life decisions.

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

Although you may already be working (or have worked) with your health service, you may still find it useful to take a few minutes to consider your skills and motivation using this consumer self-assessment tool and personal stocktake.

How do I develop the knowledge, skills and experience that I need?

Although you may have done some of these things in the past, you might want to brush up on some skills or consider getting more advanced training in some of these areas. For example, you can attend:

  • advocacy 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 from a number of consumer organisations. 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.

‘Peer support is one of the most important aspects of any part of consumer perspective. Peer support comes through interacting with other people…You don’t become an expert overnight. People need to be prepared to work at learning and finding a mentor and being with others who might be a little more experienced and be willing to listen and learn.’

—Leonie Young, Consumer, Former Chair CanSpeak Queensland