Journal article
Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach
JMIR human factors, Vol.12, e68788
01/01/2025
DOI: 10.2196/68788
PMCID: PMC12151452
PMID: 40460293
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 through focus groups and surveys, iterative prototype refinement via cognitive walkthroughs, and usability testing of the functional PHR system. Feedback from patient advocacy organizations and clinical experts further informed PHR development.Results:The resulting PHR allows patients with NETs to access condition-specific information, track symptoms, monitor treatment regimens, and share data with health care providers. Patients valued the ability to visualize personal health trends and patterns over time, enhancing both self-management and communication with medical teams. Usability testing indicated high levels of patient satisfaction with the system’s functionality and design.Conclusions:The development of this PHR demonstrates the value of engaging patients in the design process to ensure that health technologies address real-world needs. Our approach provides a model for designing PHR systems for other rare conditions, highlighting the importance of patient-centered design in supporting both clinical care and longitudinal research.
Details
- Title: Subtitle
- Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach
- Creators
- Juan Pablo Hourcade - University of IowaMichael O'Rorke - University of IowaElizabeth Chrischilles - University of IowaNicholas Rudzianski - University of IowaBrian Gryzlak - University of IowaKerry Peterman - University of IowaChris Ortman - University of IowaSam Wolstencroft - University of IowaMargaret BeanElyse Gellerman - Neuroendocrine Tumor Research FoundationJosh MailmanMaryann Wahmann
- Resource Type
- Journal article
- Publication Details
- JMIR human factors, Vol.12, e68788
- DOI
- 10.2196/68788
- PMID
- 40460293
- PMCID
- PMC12151452
- NLM abbreviation
- JMIR Hum Factors
- ISSN
- 2292-9495
- eISSN
- 2292-9495
- Publisher
- JMIR Publications
- Grant note
- Patient-Centered Outcomes Research Institute Award: RD-2020C2-20329 National Center for Advancing Translational Sciences of the National Institutes of Health: UM1TR004403 Cancer Center Support Grant: P30 CA086862
Acknowledgments Research reported in this paper is funded through a Patient-Centered Outcomes Research Institute Award (RD-2020C2-20329) , by the National Center for Advancing Translational Sciences of the National Institutes of Health (award UM1TR004403) , and supported by Cancer Center Support Grant (P30 CA086862) . The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
- Language
- English
- Date published
- 01/01/2025
- Academic Unit
- Pharmacy; Epidemiology; Pathology; Nursing; Computer Science
- Record Identifier
- 9984827331302771
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