Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach.

ABSTRACT:

Background

Personal health record (PHR) software has the potential of aiding with patient engagement and data collection in longitudinal research to better understand the long-term impact of treatments on patients with rare medical conditions. Neuroendocrine tumors (NETs) represent a rare condition with unique challenges related to symptom management, treatment tracking, and patient-provider communication.

Objective

This study aimed to design, develop, and evaluate PHR software tailored for patients with NETs as part of a longitudinal research study. Our goal was to create a patient-centered PHR that supports both self-management and research data collection.

Methods

This included activities spanning the entire development lifecycle from identifying user requirements

SUBMITTER: Hourcade JP 

PROVIDER: S-EPMC12151452 | biostudies-literature | 2025 Jun

REPOSITORIES: biostudies-literature