Currently submitted to: JMIR Formative Research
Date Submitted: Dec 26, 2025
Open Peer Review Period: Jan 13, 2026 - Mar 10, 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Warning: This is an author submission that is not peer-reviewed or edited.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.
Comparing Stakeholders’ Perspectives on Parkinson’s Disease Management and Digital Technologies: An Exploratory International Survey
ABSTRACT
Background:
Parkinson’s disease (PD) is a progressive neurodegenerative disorder that poses complex challenges for persons with Parkinson’s (PwP), informal caregivers, and healthcare professionals. With growing interest in digital and predictive Artificial Intelligence (AI) tools for disease management, understanding the needs and digital readiness of these stakeholder groups is crucial.
Objective:
This work aims to (1) identify digital practices for PD management among PwP, at‑risk individuals, caregivers, and healthcare professionals; (2) compare these practices across groups; (3) explore stakeholder desires for AI-based tools; and (4) assess alignments and gaps to inform tailored AI solutions.
Methods:
An anonymous cross-sectional online survey of exploratory nature was distributed (from Dec. 2024 to Oct. 2025) in five languages. It was completed by 255 respondents. Descriptive statistics summarized responses to 41 questions, including stakeholder-specific items. Chi-square tests were performed to examine stakeholder differences in desired AI-features.
Results:
: Interest in predictive AI was high across stakeholder groups. Symptom-tracking was the most desired feature (selected by >76% of respondents); however, stakeholder priorities diverged in other areas. Healthcare professionals rated improving patient and informal caregiver engagement as significantly more important than PwP did, χ²(1, N=205)=34.78, p<.001, Cramer’s V=0.41. Despite considerable interest, the reported use of digital tools was limited, as most PwP did not use symptom-tracking apps or wearables, nor were they currently monitoring their condition, although many expressed intentions to begin.
Conclusions:
While AI tools were viewed positively across groups, there were significant gaps in current usage. Stakeholder-specific preferences, including informal caregiver engagement and preventive lifestyle guidance, highlight the importance of tailored design. These findings offer early-stage insight to guide development of future AI-based solutions for PD.
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