Patients’ willingness and ability to identify and respond to errors in their personal health records: a mixed methods analysis of cross-sectional survey data

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Title: Patients’ willingness and ability to identify and respond to errors in their personal health records: a mixed methods analysis of cross-sectional survey data
Authors: Lear, R
Freise, L
Kybert, M
Darzi, A
Neves, AL
Mayer, E
Item Type: Journal Article
Abstract: Background: Errors in electronic health records are known to contribute to patient safety incidents, yet systems for checking the accuracy of patient records are almost non-existent. Personal health records, enabling patient access to, and interaction, with the clinical record, offer a valuable opportunity for patients to actively participate in error surveillance. Objective: The aim of this study was to evaluate patients’ willingness and ability to identify and respond to errors in their personal health records. Methods: A cross-sectional survey study was conducted using an online questionnaire. Patient sociodemographic data were collected, including age, gender, ethnicity, educational level, health status, geographical location, motivation to self-manage, and digital health literacy (measured by the eHEALS tool). Patients with experience of using the Care Information Exchange (CIE) portal, who specified both age and gender, were included in these analyses. Patients’ responses to four 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 personal health records. Multinomial logistic regression was used to identify patient characteristics that predict i) ability to understand information in CIE, and ii) willingness to respond to errors in their records. The Framework Method was used to derive themes from patients’ free-text responses. Results: Of 445 patients, 40.7% (n=181) “definitely” understood CIE information and around half (49.4%, n=220) understood CIE information “to some extent”. Patients with high digital health literacy (eHEALS score ≥30) were more confident in their ability to understand their records compared to patients with low digital health literacy (odds ratio (OR) 7.85, 95% confidence interval (CI) 3.04-20.29, P<.001). Information-related barriers (medical terminology; lack of medical guidance/contextual information) and system-related barriers (functionality/usability; information communicated/displayed poorly) were described. Seventy-nine patients (17.8%) had noticed errors in their personal health record; these related to patient demographic details, diagnoses, medical history, results, medications, letters/correspondence, and appointments. Most patients (61.1%, n=272) would like to be able to flag up errors to their health professionals for correction; 20.4% (n=91) 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, P=.03) or correct errors themselves (OR 5.65, 95%CI 1.33-24.03, P=.02). Conclusions: Most patients are able and willing to identify and respond to errors in their personal health record. However, some barriers persist that disproportionately affect underserved groups. Further development of personal health record systems, including incorporating channels for patient feedback on the accuracy of their records, should address the needs of non-native English speakers and patients with lower digital health literacy.
Issue Date: 8-Jul-2022
Date of Acceptance: 24-May-2022
URI: http://hdl.handle.net/10044/1/97485
DOI: 10.2196/37226
ISSN: 1438-8871
Publisher: JMIR Publications
Journal / Book Title: Journal of Medical Internet Research
Volume: 24
Issue: 7
Copyright Statement: ©Rachael Lear, Lisa Freise, Matthew Kybert, Ara Darzi, Ana Luisa Neves, Erik K Mayer. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 08.07.2022. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.
Sponsor/Funder: Imperial College Healthcare NHS Trust
Imperial College Healthcare NHS Trust- BRC Funding
National Institute for Health Research
National Institute for Health Research
Imperial College Healthcare NHS Trust- BRC Funding
Funder's Grant Number: FIN16-79560
RDB04
RDE07 79560
RDF03
RDF01
Keywords: digital health literacy
electronic health records
errors
patient participation
patient safety
personal health records
Cross-Sectional Studies
Electronic Health Records
Health Literacy
Health Records, Personal
Humans
Surveys and Questionnaires
Humans
Cross-Sectional Studies
Health Records, Personal
Health Literacy
Electronic Health Records
Surveys and Questionnaires
08 Information and Computing Sciences
11 Medical and Health Sciences
17 Psychology and Cognitive Sciences
Medical Informatics
Publication Status: Published
Article Number: ARTN e37226
Appears in Collections:Department of Surgery and Cancer
Faculty of Medicine
Institute of Global Health Innovation



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