Consumer and community involvement
"Nothing about us without us"
Consumer and community involvement (CCI) in research means a range of things, including:
- Working in partnerships to make decisions about research priorities, policy and practice
- Community members being a part of a process rather than being invited to observe or comment on the research
- Conducting research that is with the community rather than to or for the community
Ultimately, the different perspectives and lived experiences that consumers bring to research improves its quality, relevance and impact.
How to get involved
Examples of CCI at the Flagship include:
- input on research strategy and priorities.
- they advise on project feasibility, design, and accessibility, providing a lived experience perspective to our research projects.
- input throughout the research cycle including results dissemination.
- plain language reviews of participant information sheets, consent forms and recruitment materials.
- consumer-researcher partnerships on laboratory based projects.
- roles as associate investigators or chief investigators on grants.
To register your interest or find out more:
Definitions
The words 'consumer', 'community' and 'involvement' can have different meanings, depending on the context. For CCI in research, we define them as follows:
Consumers — specifically health consumers — are patients and potential patients, carers, and people who use health care services. In our specific context, consumers are people with a lived experience of multiple sclerosis.
Community is a group of people sharing a common interest (e.g. cultural, social, political, health, economic interests) but not necessarily a particular geographic association. Different types of communities are likely to have different perspectives and approaches to their involvement in research.
Involvement is where consumers and community actively work with researchers or research organisations to help shape decisions about health research.
This active partnership is important to ensure decision making is 'with' or 'by' consumers, rather than ‘to’, ‘about’ or ‘for’ consumers.
Testimonials
Our commitment
The MS Research Flagship‘s vision is to reduce the impact of multiple sclerosis (MS) for individuals and the community. Essential to this vision is the active involvement of and partnership with consumers and the community.
We are committed to continually learning from the MS community to improve our research, ensuring meaningful outcomes for the benefit of the Tasmanian community and beyond.
Consumer and community reference committee
The Flagship has a consumer and community reference committee (C&CRC) which was established in 2019 with its own terms of reference. About us has more details of the Flagship governance structure.
The committee is comprised of up to eighteen people with MS, their carers and supporters. The chair and deputy chair of the C&CRC represent the views of MS consumers on the Flagship's steering committee, providing governance and accountability.
Their input is actively sought throughout the research cycle and their valuable contributions are acknowledged and respected.
Together we are improving the impact of our research.
Presentations
The following CCI-related presentations were recorded at the MS Research Flagship's annual Research with Connections event.