Resources

We provide a number of resources which reflect the importance of consumer and community involvement in health research. These resources include training opportunities for consumers, community members and researchers, reports summarising the outcomes of our involvement opportunities, journal publications, tools and useful links.

National Health and Medical Research Council’s Consumer Involvement Guidelines

Cancer Australia's Consumer Involvement Tool Kit

NSW Regional Health Partners Tools for Consumer Involvement

National Institute for Dementia Research Consumer Involvement in Research

Australian Clinical Trials Alliance Consumer Involvement and Engagement Toolkit

Cochrane Consumer Engagement Priority Review

National Mental Health Commission Consumer and Carer Engagement: a Practical Guide

National Health and Medical Research Council’s Engaging Aboriginal and Torres Strait Islander people in guideline development

Melbourne Academic Centre for Health Tools and Resources for Researchers

Victorian Comprehensive Cancer Centre Consumer Engagement Toolkit

Western Australian Department of Health You Matter: A guideline to support engagement with consumers, carers, communities and clinicians in health

The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial (2020) by Pernille Christiansen Skovlund, Berit Kjærside Nielsen, Henriette Vind Thaysen, Henrik Schmidt, Arnstein Finset, Kristian Ahm Hansen and Kirsten Lomborg

Consumer Engagement in Aged Care: Literature Review (2019) by the Aged Care Quality and Safety Commission

Involving consumers in health research: what do consumers say? (2018) by Angela L Todd and Don Nutbeam

Consumer engagement critical to success in an Australian research project: reflections from those involved (2018) by Annelise J. Synnot, Catherine L. Cherry, Michael P. Summers, Rwth Stuckey, Catherine A. Milne, Dianne B. Lowe and Sophie J. Hill

Service user reflections on the impact of involvement in research (2018) by Jim Gordon, Sue Franklin and Sabrina A. Eltringham

Integrating consumer engagement in health and medical research – an Australian framework (2017) by Caroline L. Miller, Kathy Mott, Michael Cousins, Stephanie Miller, Anne Johnson, Tony Lawson and Steve Wesselingh

Asking what matters: The relevance and use of patient-reported outcome measures that were developed without patient involvement (2017) by Bianca Wiering, Dolf de Boer and Diana Delnoij

Partnering with consumers: national standards and lessons from other countries (2015) by Stephen D. Gill and Melinda Gill

Two Methods for Engaging with the Community in Setting Priorities for Child Health Research: Who Engages? (2015) by Wayne Rikkers, Katrina Boterhoven de Haan, David Lawrence, Anne McKenzie, Kirsten Hancock, Hayley Haines, Daniel Christensen and Stephen R. Zubrick

'The missing links': understanding how context and mechanism influence the impact of public involvement in research (2012) by Kristina Staley, Sarah A. Buckland, Helen Hayes and Maryrose Tarpey

Survey of CCI Program Community Members' Attitudes to COVID-19 Research and Consent (2020) by Ben Horgan and Kerry Maclaurin

The link between Hearing Loss, Dementia and Mental Health Community Conversation Report (2019) by Donna M.P. Jayakody, Elizabeth Foster, Hanadi Tarawneh, Hadeel Tarawneh and Ben Horgan

Kids Immune Development Community Conversation Report (2019) by Deb Strickland, Elysia Hollams and Tanya Jones

Road Safety Community Conversation Report (2019) by Torbjorn Falkmer, Matt Albrecht, Melissa Black and Ben Horgan

Involving Consumers in the Cancer Epidemiology Network (2019) by Sonia El-Zaemey, Renee Carey, Terry Boyle, Jennifer Stone, Elizabeth Milne, Alison Reid and Lin Fritschi

Consumer and Community Involvement in Health and Medical Research: An Australia-wide Audit (2018) by Join Project Leaders – Sydney Health Partners and the Western Australian Health Translation Network

Horizon Scanning Series: The Future of Precision Medicine in Australia Consumer Engagement (2018) by Avnesh Ratnanesan, Daniel Damiano, Matthew Tice, Matt Riemann, Yang Jiao and Kiran Nair

Involving Health Consumers in Health and Medical Research: Enablers and Challengers from a Consumer Perspective (2017) by Janelle Bowden and Anthony Brown from Research4Me and Health Consumers NSW