‘Organisations need to be clear what they want from a consumer and spell out exactly what the consumer’s role is. There has to be a complete alignment between what is expected and what can be delivered.’
—David Sandoe OAM, Consumer, Former Chair Prostate Cancer Foundation of Australia

The Framework provides examples of activities for involving consumers. A significant part of consumer engagement is understanding and being explicit about the role consumers are expected to fulfil.

See consumer involvement model

How have other government organisations involved consumers in cancer policy?

Consumers have been involved in:

• development of policies associated with the national cancer reform
• state-level cancer reforms as consumer representatives in policy development teams
• development of specific policies such the national policy on advance care planning.

Hear what one policy maker thinks about involving consumers in policy.

Example of involvement of a consumer on a high-level board  

What knowledge, skills and experience do consumers need to be involved in policy?

• an experience of cancer with an ability to look beyond their own experience in the health system
• knowledge of the processes for policy development
• knowledge of the context of the policy being developed
• skills as a consumer representative and working in teams and committees.
• consumer knowledge, skills and experience (for organisations)

Do consumers want to participate?

Many consumers of health services want to have a say in their own health and in the way services are provided. The opportunity to give feedback and improve care is highly motivating for consumers if they believe their input will be heard. Some view it as an opportunity to ‘give something back’ or to ‘improve the experience for others’.

‘You get great satisfaction out of being able to help people who are on their cancer journey. And they’re not in it alone: cancer not only affects the person, but also partners and families. It’s really important that, as Australians, we try to make that journey as good as possible…. The quick satisfaction comes from supporting people at a personal level. But of course there’s a whole other level of satisfaction when you can do it on a grand scale.’
—David Sandoe OAM, Consumer, Former Chair Prostate Cancer Foundation of Australia

What’s the role of consumer organisations in policy?

Consumer groups have an active interest in the issues and are likely to be much more knowledgeable than the general public about health policy. They can provide a useful perspective on the issues from an important and distinctly different perspective. They are also a great resource for finding active and experienced consumers. Because consumers who are members of these groups will usually be accountable to the wider group for the contributions that they make at a policy level, they can provide a useful consultative link.

Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian health care consumers. CHF runs the Consumer Representatives Program in which organisations nominate consumer representatives to sit on select high level, national committees.

In addition, there are many cancer consumer organisations, charitable organisations and non-government organisations that are led by active consumers or support active consumer involvement.

Cancer and consumer health organisations

How do I find consumers to be involved in policy?

Consumer involvement in policy development requires some particular skills; thus, it will be easier if you are able to recruit consumers with previous experience as consumer advocates or representatives. You can also approach consumer groups and organisations that are already established and who can nominate consumers to be involved in your policy development work. But remember, start early:

Read about the recruitment and selection process for consumers

Or see recruitment tools below:

• training needs assessment
• cancer and consumer health organisations
• position description for a community advisory member
• position description for a community representative
• consumer orientation workshop
• principles of training
• consumer interview template
• reimbursement protocol

In breast cancer, people would not even think about developing a policy, working a program, or undertaking service development without involving a consumer.
 —Lyn Swinburne, Consumer, Founding CEO Breast Cancer Network Australia

How one consumer involved others....

‘About 13 years ago, we took over the support group at the Sydney Adventist Hospital, where I had my operation. But prior to that we were engaging with people who had suffered the same fate as me, talking to them on the telephone, following up a request from my urologist. So that’s how we started to engage with people. And we realised the most important thing for us to do was to listen to their plight and where they’re at in their journey and then apply our experience to that and build on it.
The first thing for us to do in engaging with people and building up people who can work well at all the different levels is to engage with them personally, see what their skill sets are and then take it from there. That’s our grassroots support group network type approach. The support group network of the Prostate Cancer Foundation of Australia has over 135 groups. It’s a rich source for recruiting people and a stepping stone for people to get involved with advocacy.’
—David Sandoe OAM, Consumer, Former Chair Prostate Cancer Foundation of Australia