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  • 1.
    Grünloh, Christiane
    et al.
    Skolan för datavetenskap och kommunikation (CSC), KTH, Stockholm, Sweden.
    Rexhepi, Hanife
    School of Informatics. The Informatics Research Centre, University of Skövde, Skövde, Sweden.
    Cajander, Åsa
    Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction, Uppsala University, Uppsala, Sweden.
    Åhlfeldt, Rose-Mharie
    School of Informatics. The Informatics Research Centre, University of Skövde, Skövde, Sweden.
    Myreteg, Gunilla
    Örebro University, Örebro University School of Business.
    Huvila, Isto
    Faculty of Social Sciences and Economics, Åbo Akademi University, Åbo, Åland.
    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

  • 2.
    Huvila, Isto
    et al.
    Uppsala University, Department of ALM, Uppsala, Sweden.
    Moll, Jonas
    Uppsala University, Department of Information Technology, Uppsala, Sweden.
    Enwald, Heidi
    University of Oulu, Oulo, Finland.
    Hirvonen, Noora
    University of Oulu, Oulo, Finland.
    Åhlfeldt, Rose-Mharie
    University of Skövde, Skövde, Sweden.
    Cajander, Åsa
    Uppsala Univ, Dept Informat Technol, Human Comp Interact, Sweden.
    Age-related differences in seeking clarification to understand medical record information2019In: Information research, ISSN 1368-1613, E-ISSN 1368-1613, Vol. 24, no 1, article id isic1834Article in journal (Refereed)
    Abstract [en]

    Introduction: Patient accessible electronic health records can be used to inform and empower patients. However, their use may require complementary information seeking since they can be difficult to interpret. So far, relatively little is known of the information seeking that takes place in connection to health record use, and especially the way it varies in different age groups. A better understanding of patients' preferences of where and how to find explanatory information provides valuable input for the development of health information provision and counselling services.

    Method: The analysis is based on the results of a national survey of Swedish individuals (N=1,411) who had used a national patient accessible electronic health record system (Journalen).

    Analysis: The data were analysed in SPSS 24.0 using Kruskal-Wallis tests for detecting groupwise differences and Jonckheere-Terpstra tests for discovering age-related trends in the data.

    Findings: Older patients were more likely to use a telephone and younger patients to use socia l contacts to ask for clarification. Generally, older adults born between 1946-1960 appear as passive information seekers.

    Conclusion: Age gro ups differ in their preferences on how to seek clarification, which underlines the importance of a better understanding of individual differences in delivering not only technically but also intellectually accessible health information. Calling by telephone could be a habit of present older generations whereas, to a degree, searching information online could be a comparable habit of current younger generations.

  • 3.
    Hägglund, Maria
    et al.
    Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
    Åhlfeldt, Rose-Mharie
    Institutionen för informationsteknologi, Högskolan i Skövde, Skövde, Sverige.
    Koch, Sabine
    Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
    Ålander, Ture
    Department of Public Health and Caring Sciences (IFV), Uppsala University, Uppsala, Sweden.
    Scandurra, Isabella
    Örebro University, Örebro University School of Business.
    Developing and implementing national eHealth services for patients: an interactive exploration of challenges and potential solutions2015In: Digital Healthcare Empowering Europeans: Proceedings of MIE2015 / [ed] Ronald Cornet, Lăcrămioara Stoicu-Tivadar, Alexander Hörbst, Carlos Luis Parra Calderón, Stig Kjær Andersen, Mira Hercigonja-Szekeres, IOS Press , 2015Conference paper (Refereed)
    Abstract [en]

    In this workshop, examples and experiences from ongoing work to develop and implement eHealth services for citizens will be provided. Challenges and potential solutions based on different international contexts will be discussed in interactive sessions. The results will form a report suggesting strategies and activities that could provide potential solutions to the identified challenges.

  • 4.
    Scandurra, Isabella
    et al.
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
    Åhlfeldt, Rose-Mharie
    School of Humanities and Informatics, University of Skövde, Skövde, Sweden.
    Experiences of Novel e-Health Services for Patients: Pros, Cons and Future Challenges2013In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 192, p. 1254-1254Article in journal (Refereed)
    Abstract [en]

    It is crucial to involve the patient in the development of patient accessible eHealth systems. But who, how and when? Patientinvolvement in development of e-health services for citizens has gained little attention to date. It is important to highlight theexperiences, pros and cons, and explore new issues and future challenges that arise for all different stakeholders involved in e-healthdevelopment. One source of inspiration for this workshop is the European funded SUSTAINS project which aims to deploy e-healthservices with the patient as an important actor. Another is the Swedish research project My Care Pathways where focus is ondevelopment of new e-health services that enable the patient to follow and interact with their care processes. This workshop aims todiscuss the experiences made in ongoing European deployment projects of online e-health services as well as methods to improvepatient participation in such development based on current evaluations and future needs. The objective is to collect and disseminatevarious experiences from novel e-health service deployment in Europe; during the workshop active participation is desired via twitterand other eLearning tools, and afterwards the results of the workshop are published on easily accessible web sites.

  • 5.
    Scandurra, Isabella
    et al.
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Åhlfeldt, Rose-Mharie
    School of Informatics, University of Skövde, Skövde, Sweden.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Towards National Deployment of Online Medical Records and eHealth Services2014In: Vitalis - Nordens ledande eHälsomöte: Vetenskapliga papers presenterade vid Vitalis konferens, Svenska Mässan, Göteborg, 8-10 april 2014, Göteborg: Göteborgs universitet , 2014, p. 16-19Conference paper (Refereed)
    Abstract [en]

    Information and Communication Technology for health and wellbeing ('eHealth') is becoming increasingly important to deliver top-quality care to European citizens. There are a number of currently ongoing national and international efforts related to public access to eHealth services. In Sweden, the action research project DOME (Deployment of Online Medical Records and eHealth Services) aims to study and contribute to ongoing national deployment projects. This paper presents the DOME project's objectives, goals and methods as well as expected results regarding the national deployment of online medical records.

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