This article, ‘Putting the consumer in the driver’s seat: A visual journey through the Australian health‐care system as experienced by people living with dementia and their carers’, makes the case for including consumers in the design and delivery of health care.

The study conducted 25 face-to-face interviews across Australia and gathered information on how people with dementia, their family and their carers navigated their journey through the health care system.

Based on this information the research team produced an “ideal journey” that included major areas the participants felt needed improvement, including; a better recognition of early symptoms, assessment procedures and delivery of diagnosis. Participants overall felt the system was complex and hard to navigate and that a “wellness plan” would also be beneficial.

The need of a “systems navigator” to map out an individualised “wellness plan” was identified. “Consumers felt information was difficult to locate, and it was unclear when and if they would be eligible for certain supports and services. In addition, many participants stated that they felt future treatment and disease progression were unclear and, as a result, some experienced anxiety and stress in regard to their ongoing journey.”

The consumer feedback and recommendations of the project team pointed to the benefits of introducing a “systems navigator” that would review and update a “wellness plan”. This is important first-hand consumer feedback that could inform improvements to national health and aged care policy and to justify improvements to processes.

“The systems navigator job description would support the work of GPs by encompassing activities and roles conceptually similar to those of a key worker.”

(Authors: Janna Anneke Fitzgerald, Joanne Curry, Angelique Olde Meierink and Ashley Cully)