ArticleJMIR human factors2025
Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach.
Article in JMIR human factors, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed.
- Quality of life and care experiences in a US multi-institutional neuroendocrine tumor cohort.Journal of the National Cancer Institute · 2026Article
- Article
- Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data.Endocrine · 2026Article
- Using a participation monitoring database to enhance recruitment in a rare cancer population.Journal of clinical and translational science · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.