This tool helps us understand how confident people with Parkinson’s feel in managing their health and navigating care.

Parkinson’s Australia is inviting people living with Parkinson’s or Parkinson’s Plus conditions to take part in a national study using the Patient Activation Measure (PAM®).

What is the study about?

At Parkinson’s Australia, we’re working to better support people living with Parkinson’s, and we need your input.
We’re inviting you to complete a short survey called the Patient Activation Measure (PAM®). It takes just 2 to 3 minutes to complete and includes 13 simple statements about your confidence, knowledge and ability to manage your health and wellbeing. There are no wrong or right answers to the questions… they’re simply used to help us support you in the best way possible.
Your insights will help us identify gaps, strengthen advocacy, and shape resources that reflect lived experience. If you’re a person with Parkinson’s or Atypical Parkinson’s and keen to contribute to a stronger, more responsive Parkinson’s community, we’d love to hear from you.

Register your interest here: https://sv0d8.share.hsforms.com/2v4u1h3DwR0-OcxMi6PDItA

What is PAM® and why is it helpful?

The PAM® is a clinically validated tool used around the world to measure patient activation, or the skills, knowledge and confidence we each have to manage our health and care.

Knowing your PAM level helps us:

  • Better tailor information, resources and services to suit your current needs
  • Recognise what’s working well and where you may need more support
  • Track how your confidence or needs change over time.

For you, PAM can be a chance to reflect on where you’re at and what could help you feel more informed, empowered, and supported.

There are no wrong or right answers to the questions… they’re simply used to help us support you in the best way possible.

Register your interest here if you live with Parkinson’s or a Parkinson’s Plus condition.

Key Statistics

  • One study found that individuals in the highest PAM level were significantly more likely to manage chronic conditions effectively compared to those in the lowest level.
  • PAM is positively associated with health literacy. This relationship is especially important in chronic disease management, where self-care plays a major role.
  • PAM can be reliably administered in interview settings. A 2024 study confirmed that the PAM survey maintains strong psychometric properties,  including internal consistency and trait correlations, even when administered verbally to patients with visual or cognitive impairments.
  • Patient activation varies widely across populations. Studies have found that activation levels can differ based on age, education, socioeconomic status, and health condition.

Am I eligible to participate in the surveys?

Eligibility requirements include:

  • have a diagnosis of Parkinson’s, or
  • have a diagnosis of a Parkinson’s Plus condition (e.g. MSA, CBS, DLB, PSP)
  • can take 2 to 3 minutes every few months to repeat and complete the survey

Register your interest here: https://sv0d8.share.hsforms.com/2v4u1h3DwR0-OcxMi6PDItA

References

Holter, M., Avian, A., Weger, M., Strini, S., Michelitsch, M., Brenk-Franz, K., Wedrich, A., & Berghold, A. (2024). Measuring patient activation: the utility of the Patient Activation Measure administered in an interview setting. Quality of Life Research, 33, 1389–1400. https://link.springer.com/article/10.1007/s11136-024-03614-2

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Your donation helps us to achieve our core business, to improve the lives of people affected by Parkinson’s in Australia through national advocacy, raising awareness and connecting people living with Parkinson’s, their families and carers, researchers and health professionals in the Parkinson’s community.