ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2020
User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers.
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
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Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Using an Integrated Framework to Investigate the Facilitators and Barriers of Health Information Technology Implementation in Noncommunicable Disease Management: Systematic Review.Journal of medical Internet research · 2022Pooled it
- Functionalities and Issues in the Implementation of Personal Health Records: Systematic Review.Journal of medical Internet research · 2021Pooled it
- Supporting Survivor-Centered Care Through Digital Health Integration.Pediatric blood & cancer · 2026Article
- Smart Pediatric Oncology Tracker of Symptoms (SPOTS), a Web-Based Interface for the Pediatric PRO-CTCAE: Development and Usability Study.JMIR formative research · 2026Article
- Coronary artery patient's empowerment through a user-centered design of an electronic personal health record: A qualitative study.Journal of education and health promotion · 2026Article
- Development of an electronic system for self/proxy symptom tracking alongside children with cancer and their caregivers: a co-design exemplar.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Advancing cancer care through digital access in the USA: a state-of-the-art review of patient portals in oncology.BMJ oncology · 2025Review
- Myths and Presumptions About Cancer Survivorship.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2024Article
- A qualitative study of factors influencing ePHR adoption by caregivers and care providers of Alzheimer's patients: An extension of the unified theory of acceptance and use of technology model.Health science reports · 2023Article
- Adoption of a Digital Patient Health Passport as Part of a Primary Healthcare Service Delivery: Systematic Review.Journal of personalized medicine · 2022Article
- Healthy lifestyles in childhood cancer survivors in South Korea: a comparison between reports from children and their parents.Child health nursing research · 2022Article
- Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease.BMC medical informatics and decision making · 2021Article
- Playful strategies to foster the well-being of pediatric cancer patients in the Brazilian Unified Health System: a design thinking approach.BMC health services research · 2021Article
- A Worker-Centered Personal Health Record App for Workplace Health Promotion Using National Health Care Data Sets: Design and Development Study.JMIR medical informatics · 2021Article
- Co-designing a Self-Management App Prototype to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Mixed Methods Study.JMIR mHealth and uHealth · 2020Article
- Review
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
purposeThe objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer.
methodsFocus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLink
resultsMajor themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors ("Learn"), (2) secure electronic storage for healthcare documents to direct long-term follow-up care ("Store"), and (3) communication functionality to allow sharing of health documents with healthcare providers ("Share"). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory.
conclusionsUser-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.
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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.