Why consumer involvement is so important to CP-Achieve
Consumer involvement is a critical enabler for the CP-Achieve which is committed to authentically involving consumers in all stages and activities of our research. We understand that young people with cerebral palsy and their families are the experts with critical perspectives and insights. The involvement of consumers in CP-Achieve leads to more relevant and meaningful research, creating research outcomes and interventions that are more effective and person and family-centred. This means our research will make an important difference to the lives of young people with cerebral palsy.
Why we talk about ‘consumers’?
Consumers is the word we use to describe adolescents and young adults with cerebral palsy and their families and carers who work with us.
Many words are used to describe consumers, like public and patients, community, stakeholders, and people with lived experience. Opinions about the right words to use are varied, and discussions to choose the preferred words are usually robust.
We have chosen ‘consumer’ as advice from the CP community has told us that the word ‘consumer’ is empowering. In a market economy, consumers have an important role in driving demand, price, innovation and choice. Our vision for CP-Achieve is that consumer involvement drives the kind of research we do to ensure our research which meets the needs and priorities of consumers.
‘Consumer’ is also aligned with the words used by influential organisations and our funder, the National Health and Medical Research Council.
More important than the words we use, is how we work with consumers – with adolescents and young people with cerebral palsy and their families and carers. We would like consumers to be partners in all that we do, to be valued and supported, and to make a real difference to our research.
What we mean by ‘consumer Involvement’
Consumer involvement is when adolescents and young adults with cerebral palsy and their families partner with researchers in all aspects of research. Consumers involved in CP-Achieve research is not the same as being a participant in research. You have probably been invited to respond to surveys, take part in an interview or try out and test an intervention. This is being a research participant.
Our consumers can be involved as consultants, advisors, collaborators and/or co-producers of research by taking part in reference or advisory groups, and as researchers. Learn more about the difference between research participants and consumer involvement in research by clicking here.
CP-Achieve consumers are involved from the beginning and can inform what to research; planning the design and methods; carrying out the research; analysing findings and ensuring the findings reach and inform the people who need to know.
Consumers involved with CP-Achieve help find creative, appealing and effective ways of completing research with adolescents, young adults and families from across Australia including those who have significant physical disability, sensory impairments, communication difficulties and/or intellectual disability.