Parkinson’s Australia: Take part in the national survey

AGPAL, CFEP Surveys and Parkinson’s Australia have partnered to deliver a national survey that will inform the development of the Parkinson’s Disease Education Exchange (PDEX) platform, an education initiative designed to strengthen Parkinson’s acre across Australia.

The survey is a key part of the community consultation process and will help shape education and training that reflects real experiences of people living with Parkinson’s and their carers. All insights gathered though the survey will support clinicians to better recognise symptoms, communicate more clearly, and provide more coordinated, person-centred care.

Health professionals often report low confidence in recognising the early signs of Parkinson’s. Early symptoms are frequently non-motor and can start years before movement changes occur, and are commonly associated with other conditions, contributing to delayed recognition and diagnosis.

The PDEX project aims to address these gaps by strengthening clinician understanding of Parkinson’s, informed directly by lived experience. Survey findings will explore experiences of diagnosis, symptom management, access to therapies, communication with care teams, and the impact of Parkinson’s on carers.

Survey findings

Results from the national survey will directly inform the development of seven CPD-accredited education modules and practical tools for use in clinical settings. These resources will focus on improving early recognition, strengthening understanding of both motor and non-motor symptoms, supporting evidence-based management, and reducing delays in diagnosis.

The consultation process also prioritises strong representation from rural, regional and remote communities, CALD communities, and First Nations participants, ensuring the education reflects diverse experiences across Australia.

The project also incorporates the Patient Activation Measure (PAM®), which assesses a person’s confidence, skills and readiness to take part in managing their own health. By combining lived experience insights with PAM® data, the project will evaluate the impact of patient-led education over time. PAM® and CS-PAM® (Clinician Support – PAM) will be used before and after training as part of the project’s evaluation framework.

Survey details

The survey is open to people living with Parkinson’s and carers, including partners, family members and friends. It takes approximately 10–15 minutes to complete, is confidential, and will be used solely for research and program planning. The survey is open until 10 March 2026.

Access the survey here: https://bit.ly/4afR5n8