Advice from adolescents with cancer, their caregivers, and clinicians on utilizing and improving patient portals in adolescent oncology care

Abstract

Background: Adolescents with cancer have unique communication needs from other patients with cancer and adolescents without cancer. Electronic health record (EHR) patient portals offer opportunities for communication and health management, but pose challenges in balancing transparency, privacy, and health management. The 21st Century Cures Act amplified these challenges by increasing the availability of health records in patient portals. To inform portal use and policies, we analyzed advice from adolescents with cancer, their parents, and oncology clinicians regarding portal access and use. Methods: We purposefully sampled adolescents aged 12-17 with cancer and their parents from large academic pediatric oncology centers and used convenience and snowball sampling to recruit clinicians from a national professional group. We conducted semi-structured interviews, descriptively coded transcripts to generate preliminary codes, categorized themes, and applied them across transcripts. Results: We interviewed 38 adolescent-parent dyads and 53 clinicians. Interviews revealed agreement and tensions among stakeholders. Participants recommended a standard introduction of the portal, portal modifications to improve users' experiences, and encouraging portal use for health management and communication while maintaining patient access to clinicians. Adolescents and parents suggested clinicians modify notes to have a more hopeful tone. Clinicians favored delayed release of results, while parents preferred immediate release. Adolescents and clinicians encouraged adolescent control over parental proxy access, while parents favored default parental access. Conclusion: This qualitative study provides actionable recommendations for improving portal use, policy, and design for adolescents with cancer. Implementation of these findings and future research can optimize adolescent and caregiver engagement with the portal and portal usability.