Currently submitted to: JMIR Human Factors
Date Submitted: Sep 22, 2026
Open Peer Review Period: Sep 22, 2026 - Nov 17, 2026
(currently open for review)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Is all knowledge, good knowledge?: Multinational Patient Survey on AI-Generated Prognostic Insights and Actionability for Parkinson’s Disease
ABSTRACT
Background:
Predictive artificial intelligence (AI) is rapidly emerging in Parkinson's disease (PD) management, yet patient perspectives remain underexplored. Actionability is a key ethical consideration in prognostic disclosure. Understanding how people with PD (PwP) value and define actionable AI-generated prognostic information is essential for patient-centered design and implementation.
Objective:
This study aims to examine PwP’s preferences for AI-based prognostic information and explore how actionable insights are perceived and valued.
Methods:
In this convergent mixed-methods study, 149 PwP completed an online survey distributed through international patient networks between April and November 2025. Quantitative data were analysed using descriptive and inferential statistics, and free-text responses underwent qualitative content analysis.
Results:
Most expressed interest in knowing their motor prognosis (71%) and milestones (74%). Nearly half (47%) would only want feedback they can act upon. There was a significant association between education level and interest in knowing which factors may influence one’s prognosis (χ²(2)=6.69, p=.04), and between time since diagnosis and only wanting actionable insights (χ²(2)=7.38, p=.02). The meaning of actionability varied between individuals, including being described as the ability to influence disease progression, facilitating preparation, and as the credibility and personal applicability of insights. For some, actionability was necessary for wanting prognostic information, while for others information was valued regardless.
Conclusions:
Respondents valued prognostic information beyond traditional intervention-focused definitions of actionability, though substantial individual variation remained. These findings support an individualized approach to communicating prognostic information, whereby healthcare professionals regularly assess and respond to patients' evolving preferences and informational needs throughout the disease course. Clinical Trial: N/A
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