Development and Evaluation of a Patient Portal Education Module for Pediatric Patients With Cancer and Caregivers.

Abstract

Patient-facing electronic health portals, such as Epic's MyChart, enable new avenues of patient care, improving transparency and health literacy. The objective of this project was to cocreate an educational tool for pediatric patients with cancer and their caregivers to help them navigate the use of a patient portal. A patient portal educational tool for pediatric patients with cancer and caregivers was cocreated using the design thinking framework for human-centered design. This framework consists of five steps: empathize, define, ideate, prototype, and test. During the empathize step, a survey and semistructured interviews were conducted to identify patient portal educational preferences of pediatric patients with cancer and their caregivers. During the define step, a multidisciplinary working group was established to identify educational gaps. During the ideate and prototype phases, a new educational tool was developed. In the test phase, user acceptability testing (UAT) was conducted with pediatric patients with cancer and their caregivers. During ideation, 31 participants (13 patients and 18 caregivers) provided patient portal educational tool preferences; an online module was most preferred. Of the 31 participants, 26 (84%) were interested in further patient portal education. Among the 25 participants interested in patient portal education, the most commonly identified topic of interest for participants was learning about how to view appointments in their patient portal (n = 25 of 26, 96%). An online module was developed using Articulate Rise. UAT was conducted with 50 participants. A total of 100% (n = 50 of 50) felt that new oncology patients would benefit from the module when they first register for the patient portal, and 96% (n = 48 of 50) felt that the module met their learning needs. Pediatric patients with cancer and their families are interested in receiving additional training related to the use of patient portals. An educational module can be successfully created to meet patients' educational needs as they relate to patient portal knowledge.