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  • 1. Cajander, Asa
    et al.
    Grünloh, Christiane
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Lind, Thomas
    Scandurra, Isabella
    Designing eHealth Services for Patients and Relatives: Critical Incidents and Lessons to Learn2016In: PROCEEDINGS OF THE NORDICHI '16: THE 9TH NORDIC CONFERENCE ON HUMAN-COMPUTER INTERACTION - GAME CHANGING DESIGN, Association for Computing Machinery (ACM), 2016Conference paper (Refereed)
    Abstract [en]

    The number of eHealth services for patients and relatives is rapidly increasing as many countries are launching such services as a means to manage an ageing population, to increase efficiency in healthcare, and to empower patients. However, design and deployment of eHealth services for patients is challenging due to the complex setting and the multitude of affected stakeholders, which in turn make the task of eliciting and managing the needs and requirements equally challenging. Hence, this workshop(1) aims to make use of critical incident analysis as a method for collecting and jointly reflecting on practices, assumptions, and experiences in relation to the design, deployment, and use of eHealth services for patients and relatives. The goal of the workshop is to engage in joint reflection, and to find potential ways forward in relation to critical incidents as well as supporting the shaping and reshaping of eHealth design and development. This full day workshop invites researchers and practitioners to apply/provide their critical reflection in order to derive changed practices and theories about practice. We also especially invite the patients' perspective as this is crucial to achieve successful eHealth services. This workshop provides a venue for challenging the process of eHealth service design and development and is built around a concept of active participation, where the workshop participants will analyse and discuss the critical incidents together.

  • 2.
    Cajander, Åsa
    et al.
    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.
    Electronic Health Records Are More Than a Work Tool: Conflicting Needs of Direct and Indirect Stakeholders2019Conference paper (Refereed)
    Abstract [en]

    Stakeholder relationships can be complex and include conflicting needs and values, especially in a changing society. However, little is known about details of contradictory perspectives of stakeholders. More discussions are needed in HCI about complex human-centred systems development. In this paper we study the different perspectives of patients and physicians related to Patient Accessible Electronic Health Records (PAEHR) in Sweden. We used themes from interviews with physicians as a lens to analyse survey data from patients. The results show that the needs and wishes of patients conflict with the physicians’ preconceptions of patients’ needs. Moreover, the needs of patients stand in tension with the physicians’ work related preferences. Our paper highlights the necessity to consider the accuracy of stakeholders’ perspectives about other stakeholder groups. We also discuss the implications of the results in relation to design, methods and tools in HCI, and reorientation of work.

  • 3.
    Cajander, Åsa
    et al.
    Uppsala University, Sweden.
    Grünloh, Christiane
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID. CUAS Cologne University of Applied Sciences, Germany.
    Rexhepi, Hanife
    Högskolan i Skövde, Sweden.
    Worlds Apart - Doctors’ Technological Frames and Online Medical Records2015In: Schriften aus der Fakultät Wirtschaftsinformatik und Angewandte Informatik der Otto-Friedrich-Universität Bamberg (22), University of Bamberg Press , 2015, p. 357-369Conference paper (Refereed)
    Abstract [en]

    The ability of individuals to access and use their online medical records serves as one of the cornerstones of national efforts to increase patient empowerment and improve health outcomes. However, the launch of online medical records in Uppsala County, Sweden, has been criticized by the medical profession and the local doctors’ union. The aim of this paper is therefore to present the results from an exploratory study where interviews with two oncologists are analysed and discussed based on the theory of Technological Frames and Patient Empowerment. The results indicate that medical doctors have different assumptions and perspectives that affect their use of technology and how they view patient empowerment in everyday clinical work.

  • 4.
    Grünloh, Christiane
    KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.
    Harmful or Empowering?: Stakeholders’ Expectations and Experiences of Patient Accessible Electronic Health Records2018Doctoral 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.

  • 5.
    Grünloh, Christiane
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    To Share or Not to Share?: Expectations of and Experiences with eHealth Services that Allow Users Access to their Health Information2016Licentiate thesis, comprehensive summary (Other academic)
    Abstract [en]

    This thesis investigates expectations of and experiences with eHealth services that allow users access to their health information. Although eHealth services are endorsed by many politicians and patients, they are met with strong resistance by health care professionals. Lacking this support hinders the uptake of the full potential of the service, especially with relation to patient participation and empowerment.

    This research investigates the frames of reference that are constructed by stakeholders in relation to eHealth services, such as direct-to-consumer genetic testing and electronic health records. The results are based on empirical data gathered during an experiment with media informatics students in Germany, and from interviews with physicians in Uppsala, Sweden.

    The eHealth services in question were framed by the participants of the conducted studies as potentially harmful for its users. The negative expectations were based mainly on a generalized view of patients as not sufficiently knowledgable and hence unable to understand the health information provided by the service. The participants in the reported studies (physicians and students in their role as designers) felt a responsibility to prevent any potential harm for the users of the eHealth service. Due to the framing based on assumed negative consequences for a supposedly vulnerable user group, the participants preferred to advocate against access rather than for patient empowerment and participation. Accessing health information was associated as holding little value for the users.

    This research enhances the understanding of the elements underlying this skepticism and concern. It shows that a specific view of patients and/or prospective users of an eHealth system can result in incongruent technological frames and value attribution. In line with participatory and value-sensitive design approaches as well as the aim to increase technology acceptance, patients and health care professionals should not only be included in the design process but also engage in joint activities in order to enable reframing.

  • 6.
    Grünloh, Christiane
    KTH, School of Electrical Engineering and Computer Science (EECS), Media Technology and Interaction Design, MID.
    Using technological frames as an analytic tool in value sensitive design2018In: Ethics and Information Technology, ISSN 1388-1957, E-ISSN 1572-8439Article in journal (Refereed)
    Abstract [en]

    This article proposes the use of technological frames (TF) as an analytical tool to support the investigations within value sensitive design. TF can help to identify values that are consistent or conflicting within and between stakeholders, which is exemplified with a case of patient accessible electronic health records in Sweden. The article concludes that TF can help to identify values, which may then help to understand and address possible concerns in the design process.

  • 7.
    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.

  • 8.
    Grünloh, Christiane
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID. TH Köln, Germany.
    Hallewell Haslwanter, Jean D.
    FH Oberösterreich, Wels, TU Wien, Vienna.
    Kane, Bridget
    Karlstad University Business School.
    Lee, Eunji
    SINTEF ICT, Oslo.
    Lind, Thomas
    Uppsala University, Uppsala.
    Moll, Jonas
    Uppsala University, Uppsala.
    Rexhepi, Hanife
    University of Skövde, School of Informatics. The Informatics Research Centre.
    Scandurra, Isabella
    Örebro University.
    Using Critical Incidents in Workshops to Inform eHealth Design2017In: Human-Computer Interaction - INTERACT 2017, Springer, 2017, Vol. 10513, p. 364-373Conference paper (Refereed)
    Abstract [en]

    Demands for technological solutions to address the variety of problems in healthcare have increased. The design of eHealth is challenging due to e.g. the complexity of the domain and the multitude of stakeholders involved. We describe a workshop method based on Critical Incidents that can be used to reflect on, and critically analyze, different experiences and practices in healthcare. We propose the workshop format, which was used during a conference and found very helpful by the participants to identify possible implications for eHealth design, that can be applied in future projects. This new format shows promise to evaluate eHealth designs, to learn from patients’ real stories and case studies through retrospective meta-analyses, and to inform design through joint reflection of understandings about users’ needs and issues for designers.

  • 9.
    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.

  • 10.
    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

  • 11.
    Grünloh, Christiane
    et al.
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID. Cologne University of Applied Sciences, Institute of Informatics.
    Walldius, Åke
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Hartmann, Gerhard
    Cologne University of Applied Sciences, Institute of Informatics.
    Gulliksen, Jan
    KTH, School of Computer Science and Communication (CSC), Media Technology and Interaction Design, MID.
    Using Online Reviews as Narratives to Evoke Designer’s Empathy2015In: 15th IFIP TC 13 International Conference on Human–Computer Interaction, Springer Berlin/Heidelberg, 2015, p. 298-315Conference paper (Refereed)
    Abstract [en]

    Gathering health-related data is quite easy, but visualizing them in a meaningful way remains challenging, especially when the application domain is very complex. Research suggests that empathy can facilitate the design process and that narratives can help to create an empathic encounter between designers and the prospective users. We conducted an exploratory quasi-experiment in order to explore whether narratives in form of online reviews are able to evoke designer’s empathy when developing an online platform for a direct-to-consumer genetic testing service. The results suggest that the narratives can help designers to engage with and take the perspective of the prospective user, who is then represented in more detail. Lacking narratives from real people leaves the designers to their own imagination, which can lead to the use of rather abstract stereotypes that do not enable an understanding of the user, but affect the subsequent design decisions.

  • 12.
    Moll, Jonas
    et al.
    Uppsala Univ, Dept Informat Technol, Lagerhyddsvagen 2,House 2, SE-75105 Uppsala, Sweden..
    Rexhepi, Hanife
    Univ Skövde, Sch Informat, Skövde, Sweden..
    Cajander, Asa
    Uppsala Univ, Dept Informat Technol, Lagerhyddsvagen 2,House 2, SE-75105 Uppsala, Sweden..
    Grünloh, Christiane
    KTH, School of Electrical Engineering and Computer Science (EECS).
    Huvila, Isto
    Uppsala Univ, Dept ALM, Uppsala, Sweden..
    Hägglund, Maria
    Uppsala Univ, Dept Womens & Childrens Hlth, Uppsala, Sweden..
    Myreteg, Gunilla
    Uppsala Univ, Dept Informat Technol, Lagerhyddsvagen 2,House 2, SE-75105 Uppsala, Sweden.;Uppsala Univ, Dept Business Studies, Uppsala, Sweden..
    Scandurra, Isabella
    Örebro Univ, Sch Business, Ctr Empir Res Informat Syst, Orebro, Sweden..
    Ahlfeldt, Rose-Mharie
    Univ Skövde, Sch Informat, Skövde, Sweden..
    Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden2018In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 11, article id e278Article in journal (Refereed)
    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.

  • 13.
    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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