Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Feb 4, 2025
Date Accepted: Aug 13, 2025
Advice for Improving the Experience of Online Patient Portals: Qualitative Interviews with Caregiver-Adolescent Dyads
ABSTRACT
Background:
Online patient portals can benefit adolescents and their caregivers by increasing access and providing greater understanding of one’s health information, enhancing communication with clinicians, and supporting caregiver influence. Despite these benefits, adolescent uptake has been low with high attrition rates. Feedback from adolescents and caregivers is essential to improve uptake and usability of the online patient portal.
Objective:
To identify advice for medical informatics administrators and clinicians aimed at improving the adolescent and caregiver experience with the online patient portal.
Methods:
Qualitative, semi-structured interviews with adolescent-caregiver dyads with and without chronic illnesses.
Results:
We performed 102 interviews with 51 dyads of caregivers and adolescents (26 with chronic illness, 25 without chronic illness). We identified 3 themes related to adolescent and caregiver advice: (1) Encourage and support portal use, (2) Recognize the emotional experience of portal use, and (3) Improve portal usability, understandability, and individualization.
Conclusions:
Adolescents and their caregivers had specific recommendations regarding improving the usability of the portal, as well as how to promote and discuss the portal with families. Caregivers and adolescents had varied opinions on confidentiality and access, but universally recommended additional resources to improve uptake and usability, improved clinician communication outside and through the portal, and a personalized user-centered design.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.