Download transcript of the video - Consumer Learning

Introduction to Consumer Learning
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Phyllis Butow
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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,
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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.
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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.
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