Patient-Generated Health Data Elements: Developing a Data Model for Preference-Sensitive Conditions.

Area of Science:

• Digital Health
• Patient Engagement
• Health Informatics

Background:

• Patient-generated health data (PGHD) is vital for shared decision-making (SDM).
• SDM is particularly important for preference-sensitive conditions like epilepsy and multiple sclerosis (MS).
• Current PGHD is often verbal or written, with increasing digital potential.

Purpose of the Study:

• To understand the types of PGHD shared and desired by people with epilepsy or MS (pwE/MS).
• To explore the role of PGHD in SDM for pwE/MS.
• To identify barriers and facilitators for PGHD integration into clinical practice.

Main Methods:

• Qualitative study investigating PGHD elements among pwE/MS.
• Analysis of currently shared and wished-to-be-shared PGHD with healthcare professionals (HCPs).

Main Results:

• PwE/MS consider many PGHD types crucial for decision-making.
• PwE/MS report limited digital transmission capabilities for their health data.
• Healthcare professionals' (HCPs) recognition and engagement with PGHD in SDM are insufficient.

Conclusions:

• Digital health services can improve PGHD integration into care.
• Enhanced HCP engagement and digital infrastructure are needed for effective PGHD utilization in SDM.
• Empowering patients in managing their health requires better PGHD sharing mechanisms.