Patients’ Willingness and Ability to Identify and Respond to Errors in Their Personal Health Records: Mixed Methods Analysis of Cross-sectional Survey Data (Preprint)

Abstract

Errors in electronic health records are known to contribute to patient safety incidents; however, systems for checking the accuracy of patient records are almost nonexistent. Personal health records (PHRs) enabling patient access to and interaction with the clinical records offer a valuable opportunity for patients to actively participate in error surveillance.

This study aims to evaluate patients’ willingness and ability to identify and respond to errors in their PHRs.

A cross-sectional survey was conducted using a web-based questionnaire. Patient sociodemographic data were collected, including age, sex, ethnicity, educational level, health status, geographical location, motivation to self-manage, and digital health literacy (measured using the eHealth Literacy Scale tool). Patients with experience of using the Care Information Exchange (CIE) portal, who specified both age and sex, were included in these analyses. The patients’ responses to 4 relevant survey items (closed-ended questions, some with space for free-text comments) were examined to understand their willingness and ability to identify and respond to errors in their PHRs. Multinomial logistic regression was used to identify patients’ characteristics that predict the ability to understand information in the CIE and willingness to respond to errors in their records. The framework method was used to derive themes from patients’ free-text responses.

Of 445 patients, 181 (40.7%) “definitely” understood the CIE information and approximately half (220/445, 49.4%) understood the CIE information “to some extent.” Patients with high digital health literacy (eHealth Literacy Scale score ≥26) were more confident in their ability to understand their records compared with patients with low digital health literacy (odds ratio [OR] 7.85, 95% CI 3.04-20.29; <i>P</i>&lt;.001). Information-related barriers (medical terminology and lack of medical guidance or contextual information) and system-related barriers (functionality or usability and information communicated or displayed poorly) were described. Of 445 patients, 79 (17.8%) had noticed errors in their PHRs, which were related to patient demographic details, diagnoses, medical history, results, medications, letters or correspondence, and appointments. Most patients (272/445, 61.1%) wanted to be able to flag up errors to their health professionals for correction; 20.4% (91/445) of the patients were willing to correct errors themselves. Native English speakers were more likely to be willing to flag up errors to health professionals (OR 3.45, 95% CI 1.11-10.78; <i>P</i>=.03) or correct errors themselves (OR 5.65, 95% CI 1.33-24.03; <i>P</i>=.02).

A large proportion of patients were able and willing to identify and respond to errors in their PHRs. However, some barriers persist that disproportionately affect the underserved groups. Further development of PHR systems, including incorporating channels for patient feedback on the accuracy of their records, should address the needs of nonnative English speakers and patients with lower digital health literacy.