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Patients’ Experiences of Accessing Their Electronic HealthRecords: National Patient Survey in Sweden
Department of Information Technology, Uppsala University, Uppsala, Sweden.
University of Skövde, School of Informatics. University of Skövde, The Informatics Research Centre. (Information Systems)ORCID iD: 0000-0001-8957-9853
Department of Information Technology, Uppsala University, Uppsala, Sweden.
KTH Royal Institute of Technology, Stockholm, Sweden / Institute of Informatics, TH Köln University of Applied Sciences, Gummersbach, Germany.
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2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 11, article id e278Article in journal (Refereed) Published
Abstract [en]

Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients’ experiences of using PAEHRs in Sweden or Europe, more generally.

Objective: The objective of our study was to investigate patients’ experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.

Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.

Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one’s health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.

Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way—several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

Place, publisher, year, edition, pages
2018. Vol. 20, no 11, article id e278
Keywords [en]
eHealth, medical records, national survey, patients, patient-accessible electronic health records, patient portal, personal health records
National Category
Computer and Information Sciences
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:his:diva-16430DOI: 10.2196/jmir.9492ISI: 000450280900001PubMedID: 30389647Scopus ID: 2-s2.0-85056037728OAI: oai:DiVA.org:his-16430DiVA, id: diva2:1265564
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DOMEAvailable from: 2018-11-24 Created: 2018-11-24 Last updated: 2019-02-19Bibliographically approved

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