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Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in Sweden
Uppsala University, Uppsala.ORCID iD: 0000-0002-4772-4730
University of Skövde, School of Informatics. The Informatics Research Centre.ORCID iD: 0000-0001-8957-9853
Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..ORCID iD: 0000-0001-7472-2215
KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.ORCID iD: 0000-0003-2319-3186
Show others and affiliations
(English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871Article in journal (Refereed) In press
Abstract [en]

Background: Internationally, there is a movement toward providing patients online 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 the possibility to access their medical information online. 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.

Objectives: 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 chisquare 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.

Keywords [en]
Patient accessible electronic health records, medical records, personal health records, eHealth, patient portal, patients, national survey
National Category
Human Computer Interaction
Research subject
Technology and Health; Information and Communication Technology
Identifiers
URN: urn:nbn:se:kth:diva-235844OAI: oai:DiVA.org:kth-235844DiVA, id: diva2:1253987
Note

QC 20181008

Available from: 2018-10-08 Created: 2018-10-08 Last updated: 2018-10-08Bibliographically approved
In thesis
1. Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records
Open this publication in new window or tab >>Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Healthcare systems worldwide face organisational and financial challenges due to increasing number of people with chronic conditions, increasing costs, and an ageing population. eHealth services have the potential to address some of these challenges, for example, by supporting patients who are engaged in self-care, improving quality of care, and reducing medical costs.

In 2012, Region Uppsala in Sweden launched an eHealth service that enabled patients to access their electronic health records through the Internet. The launch of the service was accompanied by strong criticism from healthcare professionals (HCPs) and was heavily debated in the media. Patients on the other hand were very positive towards the service.

Albeit promising, the potential of Patient Accessible Electronic Health Records (PAEHRs) cannot be realised if HCPs still have reservations towards the service and their concerns are not fully understood. The purpose of this research is therefore to enhance our understanding of how physicians view PAEHR in relation to both their work environment and the level of patient participation. Furthermore, the aim is to shed light on whether their concerns related to patients’ well-being have materialised in practice and how patients view and make use of the service. Finally, this thesis identifies implicated human values and value tensions related to PAEHR.

To enhance our understanding of the physicians’ perspective, semi-structured interviews with 12 physicians in Uppsala were thematically analysed. A national patient survey was conducted to investigate patients’ use of and their experiences with PAEHR. Furthermore, empirical and conceptual investigations were carried out to identify human values and value tensions.

The results of this research show that the physicians’ assumptions and views of PAEHR and its consequences for patients were different from the views and actual experiences of patients using the PAEHR system. The physicians were mainly concerned about potential increase in their workload and that it could be harmful for patients to access their Electronic Health Record (EHR), for example, as it might evoke anxiety or worry. The vast majority of patients appreciated timely access to their results, felt more involved in their care, and read their records to become more involved. The investigation of human values associated with PAEHR identified values such as Ownership & Property, Professional Autonomy, Responsibility, Human Well-Being, Accountability & Transparency, and Trust. Furthermore, value tensions were identified that may occur between direct and indirect stakeholders (here: patients and physicians), or are related to an interpretation of PAEHR.

This thesis contributes to current research on eHealth in Human-Computer Interaction (HCI) by instigating a critical discussion of values associated with eHealth technologies that might be perceived as conflicting given a stakeholder’s framing of the technology. For example, tensions that emerge between values that prioritise placing the responsibility on a physician for their patients versus a value system that prioritises patient autonomy. The findings of this thesis suggest that while policymakers and government agencies adhere to a system of values that place a premium on patient empowerment, paternalistic tendencies are still present among physicians. However, an eHealth service like PAEHR is an important first step towards patient participation. The results of this thesis suggest that the support of patient participation in their own care through PAEHR outweighs the potential harm.

Place, publisher, year, edition, pages
KTH Royal Institute of Technology, 2018
Series
TRITA-EECS-AVL ; 2018:72
National Category
Human Computer Interaction
Research subject
Technology and Health; Information and Communication Technology
Identifiers
urn:nbn:se:kth:diva-235848 (URN)978-91-7729-971-4 (ISBN)
Public defence
2018-11-02, F3, Lindstedtsvägen 26, Stockholm, 13:00 (English)
Opponent
Supervisors
Note

QC 20181008

Available from: 2018-10-08 Created: 2018-10-08 Last updated: 2018-10-11Bibliographically approved

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Grünloh, Christiane

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