Tracking symptoms has always been important in Parkinson’s disease (PD) care. But as participants in AI-PROGNOSIS interviews, surveys, and workshops repeatedly emphasised, tracking alone is not enough. Data becomes meaningful only when it translates into actionable insights that can support daily life and clinical decision-making.

What people with Parkinson’s want

People with Parkinson's (PwP) shared clear expectations for digital tools:

• Automatic data collection: To reduce the burden of input, as much information as possible should be gathered passively through wearables and sensors.

• Clear motivation: When manual input is required, PwP want to understand why it matters and how it will benefit them.

• Actionable information: Symptom tracking should not end with raw data. Participants stressed the importance of receiving feedback that can inform care decisions, such as changes in symptom trends or responses to medication.

• Accessible visualisation: Graphs and reports should be simple, contextualised, and easy to interpret. PwP noted that unclear or overly complex information can lead to anxiety or disengagement.

• Education: Supplementary content explaining symptoms and when to seek medical advice was seen as an important feature to build trust.

Healthcare professionals’ needs

Healthcare professionals (HCPs) also contributed their views through AI-PROGNOSIS workshops. They emphasised that data collection should directly support clinical care by focusing on what matters most in practice:

• Daily life activities: Measures such as eating, writing, or dressing were considered essential indicators of disease progression.

• Pre-visit reports: Concise, one-page summaries (preferably graphical) were requested to help clinicians prepare for consultations efficiently.

• Alerts: Notifications about significant changes could be valuable, especially for general practitioners and neurologists. However, HCPs also cautioned against overwhelming clinicians with excessive alerts.

• Workflow integration: Data needs to be structured in ways that align with existing medical records and reporting systems.

Survey results

Surveys conducted as part of AI-PROGNOSIS confirmed these priorities across PwP, caregivers, people at risk, and HCPs. Symptom tracking was the most requested AI feature in all groups. Respondents highlighted its value particularly for:

• Monitoring progression over time,

• Linking symptoms with medication effects, and

• Supporting personalised recommendations to reduce risks.

Among PwP, many expressed interests in prognosis information if it came with actionable options. For HCPs, linking symptom tracking to medication timing and side effects was seen as especially important.

Through interviews, surveys, and workshops organised by AI-PROGNOSIS, the message has been clear: symptom tracking is valuable only if it leads to insights that can be acted upon. PwP want tools that are motivating and easy to use, while HCPs want structured data that supports clinical care. These findings are now guiding the design of AI-PROGNOSIS tools – the mAI-Care app for patients and the mAI-Insights platform for clinicians – ensuring that digital health solutions provide meaningful support for both patients and clinicians.