Advice for Improving the Experience of Web-Based Patient Portals: Qualitative Interviews With Caregiver-Adolescent...

Web-based 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 the uptake and usability of the web-based patient portal.

The aim of the study is to identify advice for medical informatics administrators and clinicians directed at improving the adolescent and caregiver experience with the web-based patient portal.

Caregivers completed a demographic survey followed by separate qualitative, semistructured interviews with adolescent-caregiver dyads with and without chronic illnesses. Caregivers and adolescents were interviewed separately regarding advice for administrators and clinicians on several topics, including (1) providing adolescent and caregiver portal access, (2) how doctors should discuss the portal with families and the content of their notes, and (3) what general advice they had to improve portal access for families. We performed thematic analysis to develop a codebook, and team members applied these codes to the transcripts and analyzed for overlaps and contrasts.

We performed 102 interviews with 51 dyads of caregivers and adolescents (26 with chronic illness and 25 without chronic illness). The majority of adolescents and their caregivers were White (adolescents: n=28, 55% and caregivers: n=28, 55%) or Black (adolescents: n=21, 41% and caregivers: n=21, 41%) and female (adolescents: n=30, 59% and caregivers: n=50, 98%). The majority of caregivers had accessed their child's portal (n=33, 65%), whereas the majority of adolescents had not (n=17, 33%). We identified three themes related to adolescent and caregiver advice: (1) encouraging and supporting portal use, (2) recognizing the emotional experience of portal use, and (3) improving portal usability, understandability, and individualization. Adolescents and their caregivers provided specific recommendations regarding initial access or enrollment including improving resources and clinician encouragement as well as improving the usability in terms of user-friendly design, understandable language, and clear expectations. Finally, caregivers and adolescents had varied opinions on confidentiality and access but emphasized the importance of understanding the emotional impact and providing guidance to caregivers and adolescents.

Adolescents and caregivers outlined critical advice to medical informatics administrators and clinicians to improve the patient portal uptake and usability. Further research is required to determine the best application for these recommendations, including the potential use for advance technologies to simplify results and clinical documentation, strategies to improve the user-friendly design, and how clinicians should communicate with families now that clinical documentation is viewable to patients and caregivers.