The Consumer Involvement and Engagement Toolkit provides practical advice for researchers and research organisations wishing to conduct patient-centred clinical trials.
The Consumer Involvement Toolkit is based on the principles of the National Framework for Consumer Involvement in Cancer Control. The Framework is the foundation for the VCCC Model of Consumer Engagement.
Cancer Voices NSW
Cancer Voices has created guides to assist researchers and consumer representatives work together.
Centre for Health Communication and Participation
The Centre for Health Communication and Participation mission is to improve health communication with and participation by consumers and carers through evidence-informed policy and decision making.
Monash Partners Academic Health Science Centre
Consumer and Community Involvement is a series of six self-paced online modules, providing general and practical information and strategies for research and healthcare improvement projects.
The Partnering with Consumers Standard recognises the importance of involving patients in their own care and providing clear communication to patients.
NHMRC Consumer and Community Engagement webpage, including Toolkit for Consumer and Community Involvement in Health and Medical Research (2020). The Guidelines for Guidelines Handbook includes planning for consumer involvement to help developers produce high-quality guidelines that meet the NHMRC Standards for Guidelines.
Paediatric Integrated Cancer Service (PICS)
PICS aims to ensure that children and adolescents with cancer receive the best care, in the best facility, as close to home as possible, through a networked paediatric cancer care system in Victoria. Their Consumer Participation Framework provides a guide to how consumers can participate in PICS service improvement projects and make an impact to improve services overall.
Primary Care Collaborative Cancer Clinical Trials Group (PC4)
The Primary Care Collaborative Cancer Clinical Trials Group (PC4) supports the development of large scale, multi-site clinical trials, which inform new models of cancer prevention and management in the community.
Consumers are vital to PC4's work and resources are available to assist their active involvement. References include a consumer investigator position description, access to videos explaining health economics and a guide for consumers who may be asked to review research concepts and applications.
Safer Care Victoria
Partnering in healthcare framework supports health services with practical strategies to improve healthcare and outcomes for Victorians by better involving patients and their families.
Telethon Kids Institute
The Telethon Kids Institute is committed to involving consumers and the community in all aspects of the research including workshops and resources for implementation.
Health consumer organisations across Australia
Health Issues Centre
Consumers Health Forum of Australia
Cancer Voices Australia
HealthCare Consumers (ACT)
Health Consumer NSW
Health Consumers Queensland
Health Consumers Alliance of SA
Health Consumers’ Council (WA)
Consumer and Community Health Research Network (WA)
SPOR: Strategy for Patient-Oriented Research (Canada)
INVOLVE: National Institute for Health Research (UK)
PCORI: Patient-Centered Outcomes Research Institute (US)