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Every year we evaluate a few of the key issues that are important to us. One of those issues is the words we use to describe adolescents and young adults with cerebral palsy and their families and carers who work with us. Their involvement informs our research, ensuring it is relevant for people with cerebral palsy and their families and carers.
We will keep using the word “consumer”. The steering group asked for advice from a person with cerebral palsy and a family member who are employed with CP-Achieve, and explored the words used in Australia and overseas. 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.
Why use the word “consumers”?
It 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, and results in research which meets the needs and priorities of consumers.
It is aligned with the words used by influential organisations. Consumer is the word used by our funder, the National Health and Medical Research Council. It is also used by the Consumer and Community Involvement Program in Western Australia, which paved the way for consumer involvement in research in Australia as early as 1998.
It is practical. Consumer is short, and quick to say and write.
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.
We believe that our research is better with consumer involvement and our findings better meet the needs of people with cerebral palsy and their families.
Consumers can be involved as consultants, advisors, collaborators and/or co-producers of research by taking part in reference groups, advisory panels, and as researchers.
CP-Achieve aims to:
- Involve consumers from the beginning to decide what to research; plan the design and methods; carry out the research; analyse findings; and ensure that the findings reach and inform the people who need to know in the best ways
- Find creative, appealing and effective ways of involving adolescents, young adults and families from across Australia including those who have significant physical disability, sensory impairments, communication difficulties and/or intellectual disability
CP-Achieve aims to involve adolescents and young adults, aged 10 to 30 years, and families of young people in all our activities. We believe that this consumer involvement improves every aspect of our research, making it stronger, more relevant to young people with cerebral palsy and their families, and more ethical. This means our research will make an important difference to the lives of young people with cerebral palsy.
Consumers involved in CP-Achieve research IS NOT THE SAME at 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.