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  • 1.
    Grünloh, Christiane
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..
    Myreteg, Gunilla
    Örebro University Business School, Örebro, Sweden.
    "The Record is Our Work Tool!"-Physicians' Framing of a Patient Portal in Sweden2016In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 18, no 6, p. 470-483Article in journal (Refereed)
    Abstract [en]

    Background: Uppsala County in Sweden launched an e-health patient portal named Journalen in 2012, which allows patients to access their medical records over the Internet. However, the launch of Journalen was critically debated in the media. The professionals were strongly skeptical and one reason was possible negative effects on their work environment. This study hence investigates the assumptions and perspectives of physicians in order to understand their framing of the patient portal in relation to their work environment.

    Objective: The study uses the concept of Technological Frames to examine how physicians in different specialties make sense of the patient portal in relation to their work environment.

    Methods: 12 semi-structured interviews were conducted with physicians from different specialties. Interviews were transcribed and translated. A theoretically informed thematic analysis was performed.

    Results: The thematic analysis revealed four main themes: work tool, process, workload, and control. Physicians perceive medical records as their work tool, written for communication within healthcare only. Considering effects on work environment the physicians held a negative attitude and expected changes, which would affect their work processes in a negative way. Especially that patients might read their test results prior to the physician was seen as possibly harmful for patients and as an interference with their established work practices. They expected the occurrence of misunderstandings and needs for additional explanations, which would consequently increase their workload. Other perceptions were that the portal would increase controlling and monitoring of physicians, and increase or create a feeling of mistrust from patients. Regarding benefits for the patients most of the physicians believe there is only little value in the patient portal and that patients would mostly be worried and misunderstand the information provided.

    Conclusions: Supported by the study we conclude: 1) The transfer of a paper-based healthcare process where patients read on paper, into a digital process challenges current work practices and has consequences for the work environment. Mostly this is explained by the changing positions between the physicians and the patient: the latter can drive the process, which reduces the physicians’ ability to guide the patient. 2) The physicians’ experiences were expressed as worries: patients would not understand the content of the record and become unnecessary anxious from misunderstandings. The concerns are to some extent based on a generalized view of patients, which might disregard those, who already actively participate in healthcare. This study hence reveals a need to provide physicians with information about the values for patients from using patient portals. 3) A change of work practices may be beneficial to increase patient participation, but such changes should preferably be designed and discussed with physicians. However, the strong resistance from the physicians made this challenging when launching Journalen.

  • 2.
    Grünloh, Christiane
    et al.
    KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID. Institute of Informatics, Technische Hochschule Köln, University of Applied Sciences, Gummersbach, Germany.
    Myreteg, Gunilla
    Uppsala University, Department of Business Studies.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..
    Rexhepi, Hanife
    University of Skövde, School of Informatics. The Informatics Research Centre.
    “Why Do They Need to Check Me?” Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study2018In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 1, article id e11Article in journal (Refereed)
    Abstract [en]

    Background: Roles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients. Objective: This qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians’ constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement. Methods: A total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed. Results: Two important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient’s role, lack of skills (technical or regarding medical jargon), motives to read, and patients’ characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care. Conclusions: Literature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the results, paternalistic practices are still present, even if professionals might not be aware of this. This can create a conflict between patients who strive to become more informed and their questions being interpreted as signs of critique and mistrust toward the physician. We thus believe that the full potential of PAEHRs is not reached yet and argue that the concept of patient empowerment is problematic as it triggers an interpretation of “power” in health care as a zero-sum, which is not helpful for the maintenance of the relationship between the actors. Patient involvement is often discussed merely in relation to decision making; however, this study emphasizes the need to include also sensemaking and learning activities. This would provide an alternative understanding of patients asking questions, not in terms of “monitoring the doctor” but to make sense of the situation.

  • 3.
    Grünloh, Christiane
    et al.
    KTH, School of Computer Science and Communication (CSC). TH Köln - University of Applied Sciences, Germany.
    Rexhepi, Hanife
    University of Skövde, School of Informatics. The Informatics Research Centre.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..
    Åhlfeldt, Rose-Mharie
    University of Skövde, School of Informatics. The Informatics Research Centre.
    Myreteg, Gunilla
    Örebro University Business School.
    Huvila, Isto
    Åbo Akademi University, Faculty of Social Sciences and Economics.
    Patient Empowerment Meets Concerns for Patients: a Study of Patient Accessible Electronic Health Records in Sweden2016In: Exploring Complexity in Health: An Interdisciplinary Systems Approach / [ed] Alexander Hoerbst, Werner O. Hackl, Nicolette de Keizer, Hans-Ulrich Prokosch, Mira Hercigonja-Szekeres, Simon de Lusignan, IOS Press, 2016Conference paper (Refereed)
    Abstract [en]

    Background

    As part of a EU project, the Swedish county Uppsala launched a patient portal, Journalen in 2012 [1]. Patients can now access their Electronic Health Records (EHR) online, which is aimed to increase patient empowerment. The medical professionals reacted strongly on patients accessing the medical records. Main concerns were related to quality of care, the effect on their work environment, providing bad news through the eHealth service, and also the wellbeing of patients. While the opportunities of implementing these e-health services seem promising, the concerns of the medical professionals have to be understood and addressed, as well as the actual use of the system by patients. This presentation integrates results from two interview studies with physicians and patients related to patients accessing their medical records online [2,3].

    Method

    The presented results are synthesis of the interviews studies with 12 physicians [2] and 30 patients [3], which took place about 6–12 months after the launch of the portal. The synthesis presented in this paper focus on Technological Frames [4] of physicians and patients including the attitudes and experiences in relation to possible (1) anxiety creation, (2) increased of workload, and (3) the general value of patients reading medical records.

    Results Anxiety creation due to receiving bad news. Many physicians believe that breaking bad news to patients during a patient encounter is vital as this would give them the possibility to also explain treat- ments and answer questions. Somewhat unexpectedly, some patients preferred receiving bad news through Journalen instead of waiting for the physicians. The patients argue that waiting times causes more anxiety. The choice of not accessing is also important, as there are patients who do not want to receive bad news before a patient encounter. Workload increases. Many physicians are worried about the work- load of doctors, as reading the medical record online may result in increased number of phone calls because of anxious patients. However, many patients did not tend to take any additional contacts to ask questions. Some of the patients even believe that access to their medical records reduces the number of contacts with healthcare. Usefulness of accessing online. Many physicians are concerned that online access will have a negative impact on the patient such as increased anxiety and misconceptions as they lack understanding of medical terms. Unlike the doctors’ perspective, many patients argue that they do not have major difficulties in understanding the contents. They also argue that Journalen was central to their coping with their decease.

    Conclusion

    From this study it is clear that the Technological Frames of physicians differ from those of patients, and that they have different attitudes and experiences towards the system. The intention from the politicians was that the system would contribute to Patient Empowerment, but that framing of the technology differs from the physicians’ view, as they are concerned of the consequences. More research is needed on the framing of the technology and how that has been changed after the launch of the system.

    [1] Erlingsdottir, G., Lindholm, C. When patient empowerment encounters professional autonomy: The conflict and negotiation process of inscribing an eHealth service. Scandinavian journal of public administration 2015;19(29):27- 48.

    [2] Grünloh, C., Cajander, Å., Myreteg, G., “The Record is our Work Tool!” - Physicians’ Framing of a Patient Portal in Sweden. J Med Internet Res (submitted).

    [3] Rexhepi, H., Åhlfeldt, R.-M., Cajander, Å, & Huvila, I. (2015). Cancer Patients’ Attitudes and Experiences of Online Medical Records, 1–8. Proceedings of the 17th International Symposium on Health Information Management Research ISHIMR 2015.

    [4] Orlikowski, W.J., Gash, D.C. Technological Frames: Making sense of information technology in organizations. Transactions on Information Systems 1994;12(2):174–207. doi: 10.1145/196734.196745

  • 4.
    Moll, Jonas
    et al.
    Uppsala University, Uppsala.
    Rexhepi, Hanife
    University of Skövde, School of Informatics. The Informatics Research Centre.
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction..
    Grünloh, Christiane
    KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.
    Huvila, Isto
    Åbo Akademi University, Faculty of Social Sciences and Economics.
    Hägglund, Maria
    Uppsala University, Department of Women's and Children's Health, Uppsala, Sweden.
    Myreteg, Gunilla
    Uppsala University, Department of Information Technology, Department of Business Studies.
    Scandurra, Isabella
    Örebro University.
    Åhlfeldt, Rose-Mharie
    University of Skövde, School of Informatics. The Informatics Research Centre.
    Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in SwedenIn: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871Article in journal (Refereed)
    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.

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