ArticleApplied clinical informatics2025
Patient and Family Perceptions of Real-Time Access to Electronic Health Information: A Social Media Survey.
Article in Applied clinical informatics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- Advice From Adolescents With Cancer, Their Caregivers, and Clinicians on Utilizing and Improving Patient Portals in Adolescent Oncology Care.Pediatric blood & cancer · 2026Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThis study seeks to understand pediatric rheumatology patients' and caregivers' utilization and perceptions of immediate access to their electronic health information (EHI) via patient portals.
methodsAn 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.
resultsThe 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.
conclusionThis 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.