User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers

PURPOSE: The 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. METHODS: Focus 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™ (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N=4) and focus groups with providers (N=12). RESULTS: Major themes identified through the needs assessment guided design of the PHR, including: 1) education about the life-long 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. CONCLUSIONS: User-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.