Personal Health Record Software for Neuroendocrine Tumors: Patient-Centered Design Approach
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.
Authors
- Nicholas J. Rudzianski
- Margaret Bean
- Christopher E. Ortman (ORCID: https://orcid.org/0000-0002-0934-1157)
- Brian Gryzlak (ORCID: https://orcid.org/0000-0002-0928-2943)
- Michael O’Rorke (ORCID: https://orcid.org/0000-0002-2425-3323)
- Elizabeth A. Chrischilles (ORCID: https://orcid.org/0000-0002-1843-1955)
- Kerry Peterman (ORCID: https://orcid.org/0009-0002-9584-5112)
- Josh Mailman (ORCID: https://orcid.org/0000-0002-7666-4386)
- Juan Pablo Hourcade (ORCID: https://orcid.org/0000-0002-4627-9743)
- Maryann Wahmann (ORCID: https://orcid.org/0000-0001-5499-3093)
- Elyse Gellerman
- Sam Wolstencroft
Institutions
- University of Iowa (US)
- Pancreatic Cancer Action Network (US)
- Neuroendocrine Tumor Research Foundation (US)
- Bennett Aerospace (United States) (US)
- Healing Foundation (AU)
- Healing Institute (US)
Publication Details
- Journal
- JMIR Human Factors
- Published
- 2025-06-03
- DOI
- https://doi.org/10.2196/68788
- Citations
- 1
- Primary Topic
- Electronic Health Records Systems
- Type
- article
- Field-Weighted Citation Impact
- 2.94