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National Framework for Consumer Involvement in Cancer Control National Framework for Consumer Involvement in Cancer Control Cancer Australia

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National Framework for Consumer Involvement in Cancer Control National Framework for Consumer Involvement in Cancer Control Cancer Australia National Framework for Consumer Involvement in Cancer Control National Framework for Consumer Involvement in Cancer Control Cancer Australia National Framework for Consumer Involvement in Cancer Control This report is available in print from 39 libraries around Australia and online at www.canceraustralia.gov.au ISBN: 978-1-74241-465-2 Online ISBN: 978-1-74241-466-9 Publications Approval Number –D0400 Suggested citation Cancer Australia and Cancer Voices Australia, 2011. National Framework for Consumer Involvement in Cancer Control. Cancer Australia, Canberra, ACT. Paper-based publications © Commonwealth of Australia 2011 This work is copyright. You may reproduce the whole or part of this work in unaltered form for your own personal use or, if you are part of an organisation, for internal use within your organisation, but only if you or your organisation do not use the reproduction for any commercial purpose and retain this copyright notice and all disclaimer notices as part of that reproduction. Apart from rights to use as permitted by the Copyright Act 1968 or allowed by this copyright notice, all other rights are reserved and you are not allowed to reproduce the whole or any part of this work in any way (electronic or otherwise) without first being given the specific written permission from the Commonwealth to do so. Requests and inquiries concerning reproduction and rights are to be sent to the Publications and Copyright contact officer, Cancer Australia, Locked Bag 3, Strawberry Hills, NSW 2012. Internet sites © Commonwealth of Australia 2011 This work is copyright. You may download, display, print and reproduce the whole or part of this work in unaltered form for your own personal use or, if you are part of an organisation, for internal use within your organisation, but only if you or your organisation do not use the reproduction for any commercial purpose and retain this copyright notice and all disclaimer notices as part of that reproduction. Apart from rights to use as permitted by the Copyright Act 1968 or allowed by this copyright notice, all other rights are reserved and you are not allowed to reproduce the whole or any part of this work in any way (electronic or otherwise) without first being given the specific written permission from the Commonwealth to do so. Requests and inquiries concerning reproduction and rights are to be sent to the Publications and Copyright contact officer, Cancer Australia, Locked Bag 3, Strawberry Hills, NSW 2012. Table of Contents Acknowledgements .................................................................................................................................................................................................ii Preface .........................................................................................................................................................................................................................iii 1 Introduction .................................................................................................................................................................................................. 1 2 National Framework for Consumer Involvement in Cancer Control ................................................................................... 4 3 Core Principles of Consumer Engagement in Cancer Control ............................................................................................. 4 4 Key Elements of the Framework ........................................................................................................................................................ 5 5 Criteria for each Framework Element .............................................................................................................................................. 7 6 Consumer Involvement .......................................................................................................................................................................... 9 7 Types of Consumer Involvement ......................................................................................................................................................10 8 Consumer involvement spanning the cancer pathway ..........................................................................................................12 9 Appendices .................................................................................................................................................................................................14 A Framework elements and criteria ......................................................................................................................................15 B Depth of consumer participation ........................................................................................................................................19 C Levels of consumer participation ......................................................................................................................................21 D Consumer involvement roles ................................................................................................................................................22 E Project methodology .................................................................................................................................................................23 F Literature summary ..................................................................................................................................................................25 G Consumer needs for involvement in cancer control ..................................................................................................27 H Expectations of cancer organisations and professional bodies ...........................................................................32 I Consultation findings ................................................................................................................................................................36 J Drivers for change .....................................................................................................................................................................38 K Members of the project governance ...............................................................................................................................39 10 Glossary .......................................................................................................................................................................................................43 11 References .................................................................................................................................................................................................47 List of Figures 1 Elements for effective consumer involvement in cancer control ........................................................................... 6 2 Consumer involvement capability ........................................................................................................................................ 9 3 Types of consumer involvement .........................................................................................................................................11 4 Depth of consumer participation ........................................................................................................................................19 List of Tables 1 Consumer involvement framework spanning the cancer pathway.....................................................................12 2 Framework elements and criteria ......................................................................................................................................15 3 Degrees of consumer control .............................................................................................................................................20 4 Levels of consumer participation .......................................................................................................................................21 5 Consumer involvement roles ................................................................................................................................................22 6 Consumer needs for involvement in cancer control ..................................................................................................27 7 Expectations of cancer organisations and professional bodies ..........................................................................32 8 Summary of consultation findings ....................................................................................................................................36 i Acknowledgements Cancer Australia and Cancer Voices Australia would like to thank the following people and organisations who have been instrumental in developing the National Framework for Consumer Involvement in Cancer Control: Membership of the Project Membership of the National Professor Jeanette Ward Steering Group Reference Group Ms Elise Davies Dr Ian Roos OAM (Chair) Dr Julie Thompson (Chair) Dr Euan Walpole Ms Lyn Swinburne AM Ms Mary Reid Professor Patsy Yates Dr Helen Zorbas (CEO) Ms Joan Hughes Professor Phyllis Butow Dr Anna Williamson Ms Amanda Winiata Professor Sanchia Aranda Ms Cathy Mitchell Ms Sally Crossing AM Assoc Professor Tim Shaw Professor Annette Street Ms Catherine Bullivant
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