What is Consumer and Community Involvement?
Monash Partners fully supports the engagement and participation of health care consumers and the community in research and health care innovation and improvement. Our philosophy is research and innovation in partnership with the community, rather than for the community (i.e. nothing about us without us).
We believe that collaborative partnerships between consumers, community, consumer representatives, stakeholders and researchers are vital to enhancing public confidence in research and ensuring research is relevant and translated for improved health outcomes.
Consumer and community involvement (CCI) is about researchers working in partnership with consumers and community members throughout the research cycle. This ensures that the community are actively involved in developing potential research questions as well as advising on research priorities, practices and policies.
A consumer is a person who may indirectly or directly use a health service, such as a patient, carer or potential patient. Community is a group of people with a common interest. A researcher is somebody conducting an organised and systematic investigation of a subject.
Benefits of consumer and community involvement in research have been recognised by the National Health and Medical Research Council (NHMRC) and the Consumer Health Forum of Australia and outlined in the Statement on Consumer and Community Involvement in Health and Medical Research 2016.
Consumer and Community Involvement
Spend five minutes finding out how two Australian mums feel about CCI
“IT WAS ABOUT PEOPLE LIKE ME, AND IT WAS TO HELP PEOPLE LIKE ME. IT WAS A DELIGHTFUL EXPERIENCE TO ACTUALLY HAVE SOME INFLUENCE OVER THE DIRECTION IN WHICH THE RESEARCH SHOULD HEAD.” Susan, a Monash Partners CCI advocate.
Why do we need community and consumers involved?
Consumer and community involvement in research requires planning and a clear understanding of everybody’s role. The Consumer voice may be included through consumer focus/steering groups, consumer advisory committees, community conversations, research buddy programs, surveys, research priority setting partnerships, reviewing grant applications or laymen summary reviews. It is important that the consumer involvement process is defined for each project and that both consumers and researchers have adequate training.
Consumer and community involvement is a priority for the Australian Health Research Alliance (AHRA), comprising the Advanced Health Research and Translation Centres (AHRTCs) and the Centres for Innovation in Regional Health (CIRH) recognised by the National Health and Medical Research Council (NHMRC).
Monash Partners is a member of the AHRA CCI steering committee with initial priorities being to:
- Facilitate consumer and community representation on other AHRA steering committees that oversee joint national initiatives
- Map existing CCI activities among AHRA members, including resources and training materials and make recommendations to AHRA on strategies to increase CCI
- Develop, implement and evaluate such strategie
- Develop an agreed national framework to coordinate and advance CCI across the AHRA.
Australians are already benefitting from CCI
Australian achievements in Consumer and Community Involvement are evident through enabling networks such as the:
- Consumer and Community Health Research Network in Western Australia
- Cancer Australia
- South Australian Health and Medical Research Institute
Internationally, the National Institute of Health Research in the United Kingdom recognised the need for public involvement in research and set it as a strategic priority in 2006. Significant achievements have been observed in public involvement activities including:
- Public reviewing of NIHR applications
- James Lind Alliance Priority Setting Partnerships (JLA PSPs) which bring together patients, carers and clinicians to identify research priorities in a range of disease areas
- INVOLVE: a national advisory group bringing together expertise, insight and experience in the field of public involvement in research.