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Updated: Jun 14, 2025

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

Juan Pablo Hourcade1, Michael O'Rorke2,3, Elizabeth Chrischilles2,3

  • 1Department of Computer Science, University of Iowa, 14 MacLean Hall, Iowa City, IA, 52242, United States, 1 3193532543.

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Summary
This summary is machine-generated.

This study developed a patient-centered personal health record (PHR) for neuroendocrine tumor (NET) patients, improving self-management and research data collection. The PHR enhances patient engagement and communication with healthcare providers.

Keywords:
longitudinal researchneuroendocrine tumorspersonal health recordsrare diseaseuser-centered design

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Area of Science:

  • Digital Health
  • Patient Engagement
  • Rare Diseases

Background:

  • Personal health record (PHR) software can enhance patient engagement and data collection for rare disease research.
  • Neuroendocrine tumors (NETs) present unique challenges in symptom management, treatment tracking, and patient-provider communication.

Purpose of the Study:

  • To design, develop, and evaluate a patient-centered PHR for individuals with NETs.
  • To support both self-management and research data collection within a longitudinal study framework.

Main Methods:

  • User requirements gathered via focus groups and surveys.
  • Iterative prototype refinement using cognitive walkthroughs.
  • Usability testing of the functional PHR system with patient and clinical expert feedback.

Main Results:

  • The PHR enables NET patients to access information, track symptoms, monitor treatments, and share data.
  • Patients reported high satisfaction, valuing trend visualization for self-management and communication.
  • Usability testing confirmed system satisfaction and functionality.

Conclusions:

  • Engaging patients in design ensures health technologies meet real-world needs for rare conditions.
  • This patient-centered PHR model supports both clinical care and longitudinal research.
  • The approach offers a blueprint for developing PHRs for other rare diseases.