Consumers in collaborative dementia research

Sue Kurrle presenting

Patient-centred health care is widely accepted as best practice, whereas, involving consumers in the choice and development of research projects that impact their care is atypical.

The CDPC Director, Professor Sue Kurrle, at an international conference in March this year, pointed out the CDPC research model of involving consumers in research makes the CDPC stand out.

“The CDPC does just that for dementia research, involving consumers from conception to completion,” said Professor Kurrle, at the University of Southern California’s Symposium on Elder Abuse.

Professor Kurrle’s presentation, “Collaborations in Care”, explained the CDPC’s consumer-centred research model, and that being a dementia research organisation, the consumers for CDPC research are people with dementia and their carers.

“My focus has been on truly involving consumers, ensuring research is driven by what end-users perceive is appropriate and enabling them to shape the projects from development to conclusion.

“Involvement of consumers can lead to more relevant research and improved translation of research findings into practice.

“In our model investigators work with consumers and clinicians, aged care providers and policy and decision makers to improve the quality of care for people with dementia.

“The involvement of consumers can lead to more relevant research and improved translation of research findings into practice.

“However, consumer involvement is not without its challenges in terms of the extent to which researchers are open to altering the research questions, methods, and outputs based on consumer feedback,” Professor Kurrle said.

The CDPC has a Consumer Network whose members contribute to a variety of ways such as, investigating, advising, participating and disseminating. The slogan of empowerment the network choose as their guide as voluntary advocates for consumer-centred dementia research embodies the consumer, or people centred approach, Nothing About Us – Without Us!

Links
University of Southern California Center of Elder Mistreatment
CDPC Resources