Accepted for/Published in: JMIR Formative Research
Date Submitted: Dec 6, 2024
Date Accepted: Aug 5, 2025
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Patient Access to their electronic patient record in secondary care: Results of a prospective, parallel, randomised open study
ABSTRACT
Background:
The Leeds regional adult and paediatric cystic fibrosis (CF) services introduced a modified primary care electronic healthcare record (EHR) in 2007.
Objective:
The aim of this study was to evaluate the feasibility, benefits, technological usability, and acceptability to patients of providing secure access of linked secondary care in CF.
Methods:
A prospective, parallel, randomised open study with an intervention (online EHR access) and control group (no EHR access). At baseline and six months, questionnaires were administered to assess having access to EHR on psychological impact and effect on patient satisfaction, quality of life (QoL), patient and physician relationships, and pattern and rates of adherence to treatment.
Results:
Ninety-one people with CF completed the study. Intervention n=45, median age 27.5 (IQR 12.0) years, 22 males. Control group n=46, median age 27.0 (IQR 15.0) years, 29 males. There was no effect of Patient Access on levels of anxiety (GAD-7), depression (PHQ-9), confidence in managing healthcare (PAM-13), level of trust in healthcare professionals (PEPPI), computer literacy, all symptom QoL scales and eight QoL domains (CFQ-R). Patient Access scored 86% for satisfaction, 82% for ease of use and 80% for usefulness (PHWSUQ). Of those who had EHR access, 98% agreed that access to EHR should continue.
Conclusions:
This pilot study suggests that providing access to EHR in people with CF does not appear to have a negative effect and uptake by patients has been very positive. Prospective studies are needed to investigate the long-term effect of such interventions on objective health outcomes and how we can improve the functionality of such application from the patient perspective. Clinical Trial: ClinicalTrials.gov Identifier: NCT06122025
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