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

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.