Evidence shows that where consumers are involved in the design of research and data collection tools—such as surveys or questionnaires—the tools are better received by the participants. There is also evidence that involving consumers is helpful in improving the dissemination of research findings to the community.

For example, involving consumers in setting research agendas or identifying research priorities places consumer needs at the centre of cancer research.

Involving consumers in research:

• ensures that issues important to consumers are identified and prioritised
• supports the dissemination of research results
• helps to translate research findings into clinical practice and implemented within health service delivery
• protects against money and resources being wasted on research that has little or no benefit or impact for consumers.

If these aren’t enough reasons, read from these experts below:

When you get women involved in breast cancer control, it actually encourages the clinicians and the researchers. Some of them, the researchers especially, might be looking down test tubes or working in a path lab or that sort of work………, and they go to these committees and they’re all kind of thinking the same way, and then there’s a woman amongst them who is actually at the end of all this work. And she’s saying, “Don’t give up. Keep going.” She could almost be like a coach who says, “We need answers to this. This is for my daughter.” So often just by having a person affected by cancer, not only do you get a better outcome, but actually the people on the committee get a reality check and they can be further encouraged.

−Lyn Swinburne, Consumer, Founding CEO Breast Cancer Network Australia

I think one of the things that consumers actually do…is that they reinforce for the researchers how important what we’re doing is. They’ll say, “Yes, that’s so important. I’ve had this experience and I know these people and this is going to make a difference and we’re so excited about it.” And I think that excitement about what this is actually going to mean to the people they know and what it would’ve meant to them is important feedback for the researchers.’

 −Phyllis Butow, Founding Chair, Psycho-Oncology Co-operative Research Group

I involve consumers as participants in my research—isn’t that enough?

Most of the literature about consumer involvement in research establishes that consumer engagement is NOT about recruiting patients or members of the public as participants in research or randomised control trials.

Involving consumers is about engaging them in the:

• design of the research agendas
• identification of research priorities
• design of research tools
• undertaking of interviews
• dissemination of results

I’m going to be using documents like the Framework. ……Many of the consumers I work with are incredible business people and experts in all sorts of areas…. And if you said I need to know how to organise a governance structure for a Bio Bank, they’re just delighted to be engaged in that….. I think in some ways we have a limited engagement with some of the consumer organisations in some respects because people just don’t know how to do it. The National Framework for Consumer Involvement in Cancer Control ……. gives you some broad principles, but it is not a how to guide……People still need to be walked through, and a having something like the toolbox, having some case studies and a reference for people to reach out to, is great.

−Nik Zeps

Director of Research

St John of God Subiaco Hospital