Planning for Consum er and Community Participation in Health and Medical Research A practical guide for health and medical researchers Anne McKenzie and Bec Hanley © Copyright: This book is available for educational purposes. No alteration or adaptation of these materials may be made without obtaining the permission of Anne McKenzie. Email Anne.McKenzie uwa.edu.au. Reference: McKenzie A., Hanley R. (2014) Planning for Consumer and Community Participation in Health and Medical Research: A practical guide for health and medical researchers. December 2014, ISBN 978-0-9872783-3-3 Contents Acknowledgements .........................................................................................................2 SECTION A: INTRODUCTION ..........................................................3 Foreword .........................................................................................................................3 About this book ...............................................................................................................6 Acronyms and abbreviations ...........................................................................................7 About the Consumer and Community Participation Program ..........................................8 Using the material in this book ........................................................................................8 SECTION B: FOUNDATIONS .............................................................................9 What is consumer and community participation in health research? .............................9 Why is consumer and community participation important? ...........................................10 Principles for consumer and community participation ...................................................14 SECTION C: PREPARING TO PLAN ................................................................15 What will you need to have in place? ............................................................................15 SECTION D: PLANNING FOR PARTICIPATION ..............................................17 Why are you involving consumers and community members? .....................................17 At what stages will you involve consumers and/or community members? ....................20 What level of participation are you aiming for?..............................................................23 Can you summarise what your research is about in plain language? ...........................25 Which method will you use? ..........................................................................................27 Who will you involve? ....................................................................................................37 How will you evaluate consumer and community participation .....................................41 How will you plan to prevent possible barriers occurring?.............................................45 SECTION E: CASE STUDIES ...........................................................................47 Case Study 1: ...............................................................................................................48 Case Study 2: ...............................................................................................................51 Case Study 3: ...............................................................................................................54 Case Study 4: ...............................................................................................................57 Case Study 5: ...............................................................................................................60 SECTION F: RESOURCES ...............................................................................63 Useful websites .............................................................................................................63 Australian consumer organisations ...............................................................................64 Planning form example ..................................................................................................65 Plain language summary ...............................................................................................66 Reviewing documents ...................................................................................................67 Role description examples ............................................................................................68 Advert template .............................................................................................................70 Advert example..............................................................................................................71 Application form example ..............................................................................................72 Terms of reference example ..........................................................................................73 Budgeting template........................................................................................................74 Evaluation form example ...............................................................................................75 h ........ Consumer an earc ......... ........ d C l Res ....... ....... omm edica ....... ........ unity and M 1 ............................... Partic ipation i n Health Acknowledgements We would like to sincerely thank all the people who contributed to this publication. Contributors (in order of appearance) Ms Karen Carey, consumer advocate Professor Elizabeth Geelhoed, The University of Western Australia School of Population Health Professor Jonathan Carapetis, Telethon Kids Institute Dr Rebecca Glauert, Telethon Kids Institute Ms Kylie Pussell, Miracle Babies Foundation Ms Julie Ireland, Down Syndrome WA dr Melissa o’donnell, Telethon Kids Institute Ms Margaret Cook, independent mental health consumer Dr Jan Payne, Telethon Kids Institute Ms Julie Whitlock, consumer representative Assistant Professor Anna Kemp, The University of Western Australia School of Population Health Ms Michele Kosky, MK Consulting Perth Associate Professor Rosemary Saunders, The University of Western Australia School of Population Health Associate Professor Frank Sanfilippo, The University of Western Australia School of Population Health Ms Anne Cordingley, consumer advocate Proof-readers Special thanks to the people who painstakingly read through the many drafts of this document over a long period of time, your help has been invaluable. Assistant Professor Anna Kemp, The University of Western Australia School of Population Health Dr Rosemary Wyber, Telethon Kids Institute Mr Tim Johnson, Telethon Kids Institute Ms Alison Carleton, Telethon Kids Institute Ms Kirsten Alpers, Telethon Kids Institute And lastly thanks to Ngaire McNeil, Hayley Haines and Tammy Gibbs for working so hard on the formatting of this book. Your efforts have made this into another book that we hope people will want to read. C o n su ch ........... m Resear ......... er edical ........ .... and C lth and M ....... ............... 2 ommunity Participation in Hea ............................... Section A: Introduction Foreword Medical research is a vast and deep vessel into which people facing health challenges pour their hopes and dreams, and billions of dollars in taxpayer funds. For many, now and in the future, medical research is and will be literally a life and death matter. But it’s more than that because medical research can’t take place without ordinary people. They provide the data, take the leap into the unknown, swallow the pills and gamble their health on a better tomorrow. So it’s no wonder there’s a growing expectation amongst health consumers that they should be part of the decision -making process around what and how research is conducted and funded. For researchers who have deep and often esoteric knowledge, it can be difficult to see a role for consumer representation, but time and again i’ve seen the value that SECTION A: INTRODUCTION trained consumers can bring – helping to ensure that the research question is one that will make a difference, and providing insight into the patient journey that can profoundly influence research strategies and outcomes. The School of Population Health at The University of Western Australia and the Telethon Kids Institute, lead by pioneering consumer advocate Anne McKenzie, have been at the forefront of consumer participation in research. They have developed practical and effective tools, and programs to support researchers to involve consumers and to make consumer participation more effective. This book brings together some of the leading thinking and experience in the field and will help both consumer advocates and researchers achieve their common goal: discoveries that advance health and wellbeing. Karen Carey Consumer advocate and Chair of the National Health and Medical Research council’s Community and Consumer Advisory Committee h ........ Consumer an earc ......... ........ d C l Res ....... ....... omm edica ....... ........ unity and M 3 ............................... Partic ipation i n Health The development of the contribution of consumer and community participation in research in Western Australia is largely the result of a dedicated team led by Anne McKenzie and supported by a strong collaboration between the School of Population Health at the University of Western Australia and the Telethon Kids Institute. The Consumer and Community Participation