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CC BY-NC-ND 4.0 · Appl Clin Inform 2025; 16(02): 327-336
DOI: 10.1055/a-2487-7414
Research Article

Patient and Family Perceptions of Real-Time Access to Electronic Health Information: A Social Media Survey

Caitlan S. Pinotti
1   Department of Pediatrics, Duke University, Durham, North Carolina, United States
,
Rajdeep Pooni
2   Department of Pediatrics, Stanford Children's Health, Stanford University School of Medicine, Palo Alto, California, United States
,
Vincent Del Gaizo
3   Childhood Arthritis and Rheumatology Research Alliance (CARRA), Washington, District of Columbia, United States
,
Melanie Kohlheim
3   Childhood Arthritis and Rheumatology Research Alliance (CARRA), Washington, District of Columbia, United States
,
Emily Schildt
4   Department of Pediatrics, Seattle Children's Hospital, Seattle, Washington, United States
,
Alysha J. Taxter
5   Department of Pediatrics and Clinical Informatics, Nationwide Children's Hospital, Columbus, Ohio, United States
,
Tova Ronis
6   Department of Pediatrics, Children's National Hospital, George Washington University School of Medicine and Health, Washington, District of Columbia, United States
,
for the CARRA Clinical Informatics Workgroup› Author Affiliations
Funding None.
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Abstract

Objective This study seeks to understand pediatric rheumatology patients' and caregivers' utilization and perceptions of immediate access to their electronic health information (EHI) via patient portals.

Methods An anonymous, 23-question Qualtrics survey was distributed via social media to patients and families with pediatric rheumatic diseases. The survey link and Quick Response (QR) code were posted on disease-specific Facebook accounts. Descriptive statistics were used with a thematic content analysis performed on free-text responses.

Results The survey received 253 eligible responses. Nearly 48% of participants reported accessing their electronic patient portal >12 times in the last year, while only 0.4% (one respondent) reported accessing it zero times and 8% reported accessing it 1 to 2 times. Following a medical appointment, 45% reported regularly accessing their portal the same day as their appointment, 36% when they get an alert for new results, and 0.8% only in response to a healthcare provider message. About 98% use the patient portal to access laboratory results, 98% provider notes, 80% healthcare provider messages, 64% imaging results, 53% appointments, and 28% medications. Thematic content analysis found that respondents use the portal for coordination of care and to advocate for themselves or their child. The emotional impact of access to EHI without provider explanation was variable by respondent, with some reporting increased worry and some less worry. Many respondents (18%) found value in posting results to social media sites for help in interpretation.

Conclusion This study demonstrates pediatric rheumatology patients' and caregivers' strong portal engagement and expectation for immediate access to EHI through the patient portal. Although some did report that access to EHI without provider input can increase worry or anxiety, families perceive the patient portal as a tool for self-advocacy and engagement in care, leading to a stronger sense of their role as a member of the care team.

Keywords

clinical informatics - electronic health record - patient portal - rheumatology - patient participation

Protection of Human and Animal Subjects

The study was performed in compliance with the World Medical Association Declaration of Helsinki on Ethical Principles for Medical Research Involving Human Subjects and was reviewed by the Duke Institutional Review Board (approval no.: Pro00113906).


Supplementary Material



Publication History

Received: 02 May 2024

Accepted: 25 November 2024

Article published online:
09 April 2025

© 2025. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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