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Introduction to Consumer Learning Speaker key PB Phyllis Butow PB Hello, I'm Phyllis Butow and I'm very pleased to introduce you to the Consumer Learning Website for consumers, health professionals and researchers participating in cancer clinical trials. There are 14 cancer cooperative trial groups in Australia, or CCTGs, as they're sometimes called, and as Chair of one of those groups, the Psycho-oncology Cooperative Research Group or PoCoG, I'm going to begin by reflecting on the very important role that consumers can play in contributing to the development and oversight of cancer clinical trials conducted by these groups. Consumers may be involved in developing the kernel of a research idea into a fully-fledged research project in revealing information that's provided to the general community and in providing input into the information that’s given to patients who are considering participating in a clinical trial. I've often observed how consumers, because of their experience with being diagnosed, treated and living with cancer, can add enormous value to the clinical trial process. Within my own work, consumers contribute to the setting of priorities for research, and ensuring that the patient remains at the centre of every research question. They've also contributed their business, social and political expertise to our organisation. An example of their involvement is the extensive input provided by consumers and the community to research we've been conducting recently on the experience of immigrants who have come to Australia and developed cancer. Without the input of the consumer advisory boards who helped us with this research, it would not have been possible and with their help we're now developing strategies to ensure that these immigrants receive the support and information in a language that they can read, to help them. The value-add that comes to clinical trials from active consumer involvement is certainly not confined to PoCoG. Many of my colleagues from the other cancer cooperative trial groups share my views and in fact consumers in some of these trial groups are leading the way in advocating for increased access to cancer clinical trials for new patients in supporting patients through their journey and in general, raising awareness about diverse cancers and how to treat them and better support people through that process. The availability of the information on this website will greatly help consumers and researchers and health professionals work together on cancer clinical trials. The thinking behind the learning activities is summarised in the learning framework. In the framework you can read about the intended capabilities and learning outcomes we hope the website will achieve. To help you understand how each learning activity fits within the entire programme, 1 you will see an e-learning outcome, or a number of these outcomes, at the beginning of each learning activity. Let me tell you about the site, and then I'll hope you'll explore all its features and tell others about this wonderful new resource that is available. The first tab you will see explains the 14 cancer cooperative trial groups that exist across Australia. The next tab is called Clinical Trials. This is where you can learn more about cancer clinical trials, including their history, ethics, governance and funding. After the clinical trials tab is another tab called Consumer Roles. The learning activities in this section are introduced by two very experienced cancer consumers, Cheryl Grant from the Australian and New Zealand Breast Cancer Trials Group and John Stubbs from the Australian and New Zealand Uro-Genital and Prostate Cancer Trails Group. Both Cheryl and John have some really sound advice about how to review information that's provided to consumers and the videos complement the learning activities in explaining the informed consent process and how consent is obtained. When consumers work with the cancer cooperative trial groups they often have to attend meetings and these can be daunting. To help consumers learn more about meetings a learning activity has been prepared by Ian Rouse from the Trans Tasmin Radiation Oncology Group. In fact, when I listened to this presentation, it made me think about how we run meetings, so I think you'll find this section very useful. Ian also presents a learning activity about the capable consumer. In 2010 and 2011, Cancer Australia and Cancer Voices Australia worked together to develop a national framework on consumer involvement in cancer control. As part of this national framework, the concept of the capable consumer emerged. This section of the website will help you understand the qualities of a capable consumer, a consumer that’s motivated, informed and confident is the sort of person that can make an enormous contribution to cancer clinical trials. Also included in the consumer role section are two presentations by Rachael Dear, a practising medical oncologist and Sally Crossing from the consumer organisation Cancer Voice of New South Wales. They talk about how consumers can contribute to the presentation of information about trials in scientific publications and as it's distributed to the general community, and how consumers can contribute to that process. The knowledge tab might be the section of the website that you find the most daunting. Good research has to have good design and the PoCoG's statistician, Melanie Bell, has created a learning activity to explain how research is created, designed and carried out. She'll explain sampling and how results are reported. The second section by Melanie Bell called Introduction to Bio Statistics should not be feared, it's the language of research. Melanie will explain terms you'll often hear researchers discuss, such as hypothesis testing, p-values and randomisation. This is a section of the website that you might need to come back to a number of times and I certainly encourage you to do so. The final section of the website is a list of resources. This isn't exhaustive, but it will help you find the information that you need. 2 Well, that ends the overview or tour of the website. It's now up to you to use it, learn and share it so that consumers, health professionals and researchers can continue working together to reduce the burden of cancer and improve the outcomes of people affected by cancer. So good luck and I hope you enjoy it. 3