Consumer & Community Involvement in Research
What is Consumer & Community Involvement in Research?
- Consumer involvement in research requires an active partnership
- Consumer involvement in research does not include clinical trial participation
- Different levels of consumers in research can be thought of as 3 pieces of PIE -participation, involvement and engagement which are complimentary but different ways to work with consumers
Consumers are defined as patients and potential patients, carers and people who use health care services. Consumers can also be people who represent the views and interests of a consumer organisation, a community or a wider constituency.’
Consumer and Community Involvement is where consumers and the community actively work with researchers or research organisations to help shape decisions about health research priorities, policy and practice’
‘The active partnership is important to ensure decision making is ‘with’ or ‘by’ consumers rather than ‘to’,‘about’ or ‘for’ consumers.’ ‘Consumer Involvement’ is not the same as taking part in research.
Consumer Representatives– voice perspectives on behalf of consumers (organisation or a community)’.
Consumer Engagement– is where information and knowledge about research is shared with consumers and the community so they are better informed on why, how, where and by whom research is conducted’.
Cancer Council NSW (CCNSW)
offer a free online ‘Consumer Involvement in Research’ course that can be accessed from the Cancer Council Australia website. It has a “Cancer” Focus.
Website : www.cancer.org.au/onlineresources/ elearning/consumers-in-researchtraining
Toolkits and Other Resources
Australian Clinical Trials Alliance- Involvement tool kit
The Clinical Trials Alliance Toolkit contains a small but growing collection of dedicated resources for consumers and the community, that provide insights into what it means to become ‘involved’ in research and to increase awareness around the role and value of clinical trials.
As a platform for the sharing of information and tools, the Toolkit aims to improve public awareness and understanding of clinical trials so that consumers and the community are better equipped to influence the clinical trial agenda.
Developed by Australian Clinical Trial Alliance & CT:IQ, the Toolkit page also contains patient participation and informational videos such as ” What are clinical trials”.
Telethon Kids Institute
Planning for Consumer and Community Participation in health and medical research
The National Mental Health Commission
The National Mental Health Commission published ‘The Mental Health Safety and Quality Engagement Guide’ which focuses on participation by consumers and carers at a governance level. This is where people with a lived experience can have influence on strategic decision-making and in promoting systemic changes in all aspects of mental health services.