The value of consumer input into health research and services has been acknowledged by various organisations and funding bodies in Australia and overseas, including by the National Health and Medical Research Council in Australia, the Cochrane Collaboration, and the Medical Research Council (UK).
Consumer involvement can lead to research with greater relevance, improved quality and outcomes, and facilitates translating research into practice.
Meaningful consumer engagement in research, however, has been challenging and costly to establish. It is much easier to put consumers on a steering committee which is informed on the progress of research every six months, than to encourage and support consumers to provide input into research priorities, design and dissemination. As a result, in most cases, consumer involvement in health research has been limited to passive and often tokenistic roles.
Alzheimer’s Australia is committed to meaningful consumer engagement in all steps of the research and knowledge translation process.
In 2010 Alzheimer’s Australia, in partnership with the Dementia Collaborative Research Centres, formed the Consumer Dementia Research Network. The aim of this national network is to support people with dementia and their carers to take an active role in informing the research process and contributing to better dementia care practice and outcomes.
The purpose of this paper is to provide the context and rationale for developing the Consumer Dementia Research Network, as well as describing the Network as an example of a program designed to encourage meaningful consumer involvement in research.