Consumer Advisory Groups
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.