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  • 1.
    Alklind Taylor, Anna-Sofia
    et al.
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Virtuella system.
    Backlund, Per
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Virtuella system.
    Engström, Henrik
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Virtuella system.
    Johannesson, Mikael
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Virtuella system.
    Krasniqi, Hanife
    Lebram, Mikael
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Virtuella system.
    Acceptance of Entertainment Systems in Stroke Rehabilitation2009Ingår i: Proceedings of IADIS Game and Entertainment Technologies 2009 (GET 2009), IADIS Press , 2009, s. 75-83Konferensbidrag (Refereegranskat)
    Abstract [en]

    Game-based tools for rehabilitation of different types of physical and cognitive impairments are becoming more and more popular. By introducing an element of fun, these systems aim at increasing patients' motivation to train and, from a further perspective, improve recovery rates. There is, however, a question whether such tools will be fully accepted by the intended target group. Earlier work on user acceptance has mainly focused on utility systems, i.e. systems used mainly in the work place. However, people use systems for different reasons and that makes it difficult to apply the same principles on systems with the main purpose to entertain. Serious games have characteristics from both utility and entertainment systems, which makes it interesting to study the acceptance of these kinds of systems. In this study, we have developed a home-based entertainment system for stroke rehabilitation, with focus on rehabilitation of motor impairments. By analysing the gaming behaviour and interview responses of five stroke patients, we investigate factors influencing user acceptance of this specific type of system. The results show that current models of acceptance are not sufficient to fully explain acceptance of serious games in general and serious games for rehabilitation in particular. Besides well-known factors, such as perceived usefulness, perceived ease-of-use and perceived enjoyment, other, more specific, factors also play a vital role in the acceptance of the system.

  • 2.
    Blease, Charlotte
    et al.
    General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
    Salmi, Liz
    General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Hägglund, Maria
    Department of Women's and Children's Studies, Uppsala Universitet, Sweden.
    DesRoches, Catherine M.
    General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA ; Harvard Medical School, Boston, Massachusetts, USA.
    Patients, clinicians and open notes: information blocking as a case of epistemic injustice2022Ingår i: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 48, nr 10, s. 785-793Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (’open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.

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  • 3.
    Bärkås, Annika
    et al.
    Department of Women’s and Children’s Health, Uppsala University, Sweden.
    Hägglund, Maria
    Department of Women’s and Children’s Health, Uppsala University, Sweden.
    Moll, Jonas
    Informatics, School of Business Örebro University, Sweden.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Hörhammer, Iiris
    Department of Industrial Engineering and Management, Aalto University, Finland.
    Blease, Charlotte
    General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA.
    Scandurra, Isabella
    Informatics, School of Business Örebro University, Sweden.
    Patients’ Access to Their Psychiatric Records - A Comparison of Four Countries2022Ingår i: Challenges of Trustable AI and Added-Value on Health: Proceedings of MIE 2022 / [ed] Brigitte Séroussi; Patrick Weber; Ferdinand Dhombres; Cyril Grouin; Jan-David Liebe; Sylvia Pelayo; Andrea Pinna; Bastien Rance; Lucia Sacchi; Adrien Ugon; Arriel Benis; Parisis Gallos, Amsterdam; Berlin; Washington, DC: IOS Press, 2022, s. 510-514Konferensbidrag (Refereegranskat)
    Abstract [en]

    Several Nordic and Baltic countries are forerunners in the digitalization of patient ehealth services and have since long implemented psychiatric records as parts of the ehealth services. There are country-specific differences in what clinical information is offered to patients concerning their online patient accessible psychiatric records. This study explores national differences in Sweden, Norway, Finland, and Estonia in patient access to their psychiatric records. Data was collected through a socio-technical data collection template developed during a workshop series and then analyzed in a cross-country comparison focusing on items related to psychiatry records online. The results show that psychiatric records online are offered to patients in all four countries, and provide the same functionality and similar psychiatry information. Overall, the conclusion is that experiences of various functionalities should be scrutinized to promote transparency of psychiatric records as part of the national eHealth services to increase equality of care and patient empowerment.

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  • 4.
    Bärkås, Annika
    et al.
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Kharko, Anna
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Faculty of Health, University of Plymouth, Plymouth, United Kingdom.
    Blease, Charlotte
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Division of General Medicine, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Sweden.
    Johansen Fagerlund, Asbjorn
    Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
    Huvila, Isto
    Department of ALM, Uppsala University, Uppsala, Sweden.
    Johansen, Monika Alise
    Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway ; Department of Clinical Medicine, Telemedicine and E-health Research Group, Arctic University of Norway, Tromsø, Norway.
    Kane, Bridget
    Business School, Karlstad University, Sweden.
    Kujala, Sari
    Department of Computer Science, Aalto University, Espoo, Finland.
    Moll, Jonas
    Centre for Empirical Research on Information Systems, School of Business, Örebro University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Scandurra, Isabella
    Centre for Empirical Research on Information Systems, School of Business, Örebro University, Sweden.
    Wang, Bo
    Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
    Hägglund, Maria
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden2023Ingår i: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, artikel-id e47841Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC. OBJECTIVE: The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups. METHODS: Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square. RESULTS: Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were "very important," but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups. CONCLUSIONS: About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records. 

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  • 5.
    Bärkås, Annika
    et al.
    Department of Women’s and Children’s Health, Uppsala University, Sweden.
    Scandurra, Isabella
    School of Business, Örebro University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Blease, Charlotte
    General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, United States.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Sweden.
    Hägglund, Maria
    Department of Women’s and Children’s Health, Uppsala University, Sweden.
    Patients’ access to their psychiatric notes: Current policies and practices in Sweden2021Ingår i: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 18, nr 17, artikel-id 9140Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Patients’ access to electronic health records (EHRs) is debated worldwide, and access to psychiatry records is even more criticized. There is a nationwide service in Sweden which offers all citizens the opportunity to read their EHR, including clinical notes. This study aims to explore Swedish national and local policy regulations regarding patients’ access to their psychiatric notes and describe to what extent patients currently are offered access to them. The rationale behind the study is that current policies and current practices may differ between the 21 self-governing regions, although there is a national regulation. We gathered web-based information from policy documents and regulations from each region’s website. We also conducted key stakeholder interviews with respondents from the regions and cross-regional private care providers, using a qualitative approach. The results show that 17 of 21 regions share psychiatric notes with patients, where forensic psychiatric care was the most excluded psychiatric care setting. All private care providers reported that they mainly follow the regions’ guidelines. Our findings show that regional differences concerning sharing psychiatric notes persist, despite Swedish regulations and a national policy that stipulates equal care for everyone. The differences, however, appear to have decreased over time, and we report evidence that the regions are moving toward increased transparency for psychiatry patients. 

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  • 6.
    Cajander, Åsa
    et al.
    Uppsala University, Uppsala, Sweden.
    Grünloh, Christiane
    KTH Royal Institute of Technology, Sweden / CUAS Cologne University of Applied Sciences, Gummersbach, Germany.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Worlds Apart - Doctors’ Technological Frames and Online Medical Records2015Ingår i: INTERACT 2015 adjunct proceedings: 15th IFIP TC.13 International Conference on Human-Computer Interaction 14 to 18 September 2015, Bamberg, Germany / [ed] Christoph Beckmann & Tom Gross, Bamberg: University of Bamberg Press , 2015, s. 357-367Konferensbidrag (Refereegranskat)
    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.

  • 7.
    Gruenloh, Christiane
    et al.
    KTH Royal Institute of Technology, Stockholm, Sweden / TH Köln, Gummersbach, Germany.
    Haslwanter, Jean D. Hallewell
    FH Oberösterreich, Wels, Austria / TU Wien, Vienna, Austria.
    Kane, Bridget
    Karlstad University Business School, Karlstad, Sweden.
    Lee, Eunji
    SINTEF ICT, Oslo, Norway.
    Lind, Thomas
    Uppsala University, Sweden.
    Moll, Jonas
    Uppsala University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Scandurra, Isabella
    Örebro University, Sweden.
    Using Critical Incidents in Workshops to Inform eHealth Design2017Ingår i: Human-Computer Interaction – INTERACT 2017: 16th IFIP TC 13 International Conference Mumbai, India, September 25–29, 2017 Proceedings, Part I / [ed] Regina Bernhaupt, Girish Dalvi, Anirudha Joshi, Devanuj K. Balkrishan, Jacki O'Neill, Marco Winckler, Cham: Springer, 2017, s. 364-373Konferensbidrag (Refereegranskat)
    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.

  • 8.
    Grünloh, Christiane
    et al.
    School of Computer Science and Communication, KTH Royal Institute of Technology, Stockholm, Sweden / Institute of Informatics, Technische Hochschule Köln, University of Applied Sciences, Gummersbach, Germany.
    Myreteg, Gunilla
    Department of Business Studies, Uppsala University, Uppsala, Sweden.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    "why do they need to check me?" patient participation through ehealth and the doctor-patient relationship: Qualitative study2018Ingår i: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 20, nr 1, artikel-id e11Artikel i tidskrift (Refereegranskat)
    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.

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  • 9.
    Hagström, Josefin
    et al.
    Dept. of Women's and Children's Health, Uppsala University, Sweden.
    Blease, Charlotte
    Dept. of Women's and Children's Health, Uppsala University, Sweden.
    Moll, Jonas
    Informatics, School of Business, Örebro University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Scandurra, Isabella
    Informatics, School of Business, Örebro University, Sweden.
    Hägglund, Maria
    Dept. of Women's and Children's Health, Uppsala University, Sweden.
    Adolescents' and Young Adults' Experiences of Offense from Reading Their Health Records Online2024Ingår i: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 310, s. 1422-1423Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did.

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  • 10.
    Hagström, Josefin
    et al.
    Department of Women's and Children's Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Blease, Charlotte
    Department of Women's and Children's Health, Uppsala University, Sweden ; Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States.
    Scandurra, Isabella
    School of Business, Örebro University, Sweden.
    Moll, Jonas
    School of Business, Örebro University, Sweden.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Hägglund, Maria
    Department of Women's and Children's Health, Uppsala University, Sweden ; MedTech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Adolescents' reasons for accessing their health records online, perceived usefulness and experienced provider encouragement: a national survey in Sweden2024Ingår i: BMJ Paediatrics Open, E-ISSN 2399-9772, Vol. 8, nr 1, artikel-id e002258Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background Having online access to electronic health records (EHRs) may help patients become engaged in their care at an early age. However, little is known about adolescents using patient portals. A national survey conducted within the Nordic eHealth project NORDeHEALTH provided an important opportunity to advance our understanding of adolescent users of patient portals. The present study explored reasons for reading the EHRs, the perceived usefulness of information and functions in a patient portal and the association between frequency of use and encouragement to read the EHR. Methods Data were collected in a survey using convenience sampling, available through the Swedish online health portal during 3 weeks in January and February 2022. This study included a subset of items and only respondents aged 15-19. Demographic factors and frequencies on Likert-style questions were reported with descriptive statistics, while Fisher's exact test was used to explore differences in use frequency based on having been encouraged to read by a healthcare professional (HCP). Results Of 13 008 users who completed the survey, 218 (1.7%) were unique users aged 15-19 (females: 77.1%). One-fifth (47/218, 21.6%) had been encouraged by HCPs to read their records, and having been encouraged by HCPs was related to higher use frequency (p=0.018). All types of information were rated high on usefulness, while some functions were rated low, such as blocking specific clinical notes from HCPs and managing services for family members. The main reason for reading their health records online was out of curiosity. Conclusions Adolescents who read their records online perceive it to be useful. Encouragement by HCPs can lead to increased use of patient portals among adolescents. Findings should be considered in the future design of patient portals for adolescents. 

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  • 11.
    Hagström, Josefin
    et al.
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Blease, Charlotte
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Digital Psychiatry, Department of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, United States.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Moll, Jonas
    Centre for Empirical Research on Information Systems (CERIS), Informatics, School of Business, Örebro University, Sweden.
    Kane, Bridget
    Business School, Karlstad University, Sweden.
    Scandurra, Isabella
    Centre for Empirical Research on Information Systems (CERIS), Informatics, School of Business, Örebro University, Sweden.
    Hägglund, Maria
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Security and Privacy of Online Record Access: A Survey of Adolescents' Views and Experiences in Sweden2024Ingår i: Journal of Adolescent Health, ISSN 1054-139X, E-ISSN 1879-1972Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: Ensuring security of online health records and patients' perceptions of security are concerns in adolescent healthcare. Little is known about adolescents' perceptions about healthcare's ability to protect online health records. This article explores adolescents' perspectives on security and privacy of their online health records, potential differences based on gender and health, attitudes to sharing information, and perceptions of what constitutes sensitive information. Methods: This study included a subset of items from a national online patient survey conducted in Sweden (January-February 2022), focusing on respondents aged 15–19 years. Gender and health status differences were calculated using the Kruskal-Wallis test. Results: Of 218 adolescent respondents (77.1% female), a minority had security and privacy concerns. A notable proportion (41.3%) wished to control who could see their records, and those who reported better perceived health were more likely to want to manage access to their electronic health record (H = 13.569, p = .009). Most had not experienced unauthorized access to their records (75.2%) and had never shared health information on other online applications (85.8%). More than half (56.0%) perceived some information as sensitive, where mental health was the most common (76.0%). Most felt that reading their notes improved their trust for their healthcare professional (65.6%) and supported better communication with healthcare professionals (66.5%). Discussion: In this national survey, adolescents generally reported few concerns about patient portals. Findings emphasize the need for security and privacy protection and to empower adolescents with greater control over access to their health information housed in electronic health record systems. 

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  • 12.
    Hedström, Karin
    et al.
    Örebro University.
    Jäger, Kerstin
    Högskolan i Skövde, Institutionen för teknik och samhälle.
    Krasnizi, Hanife
    Högskolan i Skövde, Forskningscentrum för Informationsteknologi. Högskolan i Skövde, Institutionen för kommunikation och information.
    Linderoth, Henrik
    Högskolan i Skövde, Institutionen för teknik och samhälle.
    Nohlberg, Marcus
    Högskolan i Skövde, Forskningscentrum för Informationsteknologi. Högskolan i Skövde, Institutionen för kommunikation och information.
    Persson, Anne
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Forskningscentrum för Informationsteknologi. Högskolan i Skövde, Institutionen för kommunikation och information.
    Vårdens framtida informationssystem - Vision i form av en demonstrator: Slutrapport.2010Rapport (Övrig (populärvetenskap, debatt, mm))
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    VFI - slutrapport
  • 13.
    Huvila, Isto
    et al.
    Department of ALM, Uppsala University, Uppsala, Sweden / Information Studies, Åbo Akademi University, Turku, Finland.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Moll, Jonas
    Örebro University School of Business, Örebro, Sweden.
    Enwald, Heidi
    Information Studies, University of Oulu, Oulu, Finland / Information Studies, Åbo Akademi University, Turku, Finland.
    Eriksson-Backa, Kristina
    Information Studies, Åbo Akademi University, Turku, Finland.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Technological and informational frames: explaining age-related variation in the use of patient accessible electronic health records as technology and information2022Ingår i: Information Technology and People, ISSN 0959-3845, E-ISSN 1758-5813, Vol. 35, nr 8, s. 1-22Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose – Data from a national patient survey (N51,155) of the Swedish PAEHR “Journalen” users were analysed, and an extended version of the theory of technological frames was developed to explain the variation in the technological and informational framing of information technologies found in the data. Design/methodology/approach – Patient Accessible Electronic Health Records (PAEHRs) are implemented globally to address challenges with an ageing population. However, firstly, little is known about age-related variation in PAEHR use, and secondly, user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other. The purpose of this study is to investigate these two under-studied aspects of PAEHRs and propose a framework based on the theory of technological frames to support studying the second aspect, i.e. the interplay of information and technology–related perceptions. Findings – The results suggest that younger respondents were more likely to be interested in PAEHR contents for general interest. However, they did not value online access to the information as high as older ones. Older respondents were instead inclined to use medical records information to understand their health condition, prepare for visits, become involved in their own healthcare and think that technology has a much potential. Moreover, the oldest respondents were more likely to consider the information in PAEHRs useful and aimed for them but to experience the technology as inherently difficult to use. Research limitations/implications – The sample excludes non-users and is not a representative sample ofthe population of Sweden. However, although the data contain an unknown bias, there are no specific reasons tobelieve that it would differently affect the survey’s age groups. Practical implications – Age should be taken into account as a key factor that influences perceptions of the usefulness of PAEHRs. It is also crucial to consider separately patients’ views of PAEHRs as a technology and of the information contained in the EHR when developing and evaluating existing and future systems and information provision for patients. Social implications – This study contributes to bridging the gap between information behaviour and systems design research by showing how the theory of technological frames complemented with parallel informational frames to provide a potentially powerful framework for elucidating distinct conceptualisations of (information) technologies and the information they mediate. The empirical findings show how information and information technology needs relating to PAEHRs vary according to age. In contrast to the assumptions in much of the earlier work, they need to be addressed separately. Originality/value – Few earlier studies focus on (1) age-related variation in PAEHR use and (2) user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other.

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  • 14.
    Hägglund, Maria
    et al.
    Department of Women's and Children's Health, Uppsala University, Sweden.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Kane, Bridget
    Information Systems, Karlstad University Business School, Sweden.
    Editorial: Personalized Digital Health and Patient-Centric Services2022Ingår i: Frontiers in Computer Science, E-ISSN 2624-9898, Vol. 4, artikel-id 862358Artikel i tidskrift (Övrigt vetenskapligt)
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    fulltext
  • 15.
    Hägglund, Maria
    et al.
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Kharko, Anna
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden ; School of Psychology, Faculty of Health, University of Plymouth, United Kingdom.
    Hagström, Josefin
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden .
    Bärkås, Annika
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Blease, Charlotte
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Department of Medicine, Division of General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Sweden.
    DesRoches, Catherine
    Department of Medicine, Division of General Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States.
    Fagerlund, Asbjørn Johansen
    Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
    Haage, Barbara
    E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Estonia.
    Huvila, Isto
    Department of Archives, Libraries & Museums, Uppsala University, Sweden.
    Hörhammer, Iiris
    Department of Computer Science, Aalto University, Espoo, Finland.
    Kane, Bridget
    Business School, Karlstad University, Sweden.
    Klein, Gunnar O.
    Centre for Empirical Research on Information Systems, School of Business, Örebro University, Sweden.
    Kristiansen, Eli
    Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
    Luks, Kerli
    E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Estonia.
    Moll, Jonas
    Centre for Empirical Research on Information Systems, School of Business, Örebro University, Sweden.
    Muli, Irene
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Raphaug, Eline Hovstad
    Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Riggare, Sara
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Ross, Peeter
    E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Estonia.
    Scandurra, Isabella
    Centre for Empirical Research on Information Systems, School of Business, Örebro University, Sweden.
    Simola, Saija
    Department of Computer Science, Aalto University, Espoo, Finland.
    Soone, Hedvig
    E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Estonia.
    Wang, Bo
    Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway.
    Ghorbanian Zolbin, Maedeh
    Department of Computer Science, Aalto University, Espoo, Finland.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Kujala, Sari
    Department of Computer Science, Aalto University, Espoo, Finland.
    Johansen, Monika Alise
    Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway ; Department of Clinical Medicine, Telemedicine and E-health Research Group, Arctic University of Norway, Tromsø, Norway.
    The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia2023Ingår i: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, artikel-id e47573Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. OBJECTIVE: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. METHODS: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. RESULTS: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as "fair" (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record "2 to 9 times" (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it "more than 20 times" (4571/13,008, 35.14%). CONCLUSIONS: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey. 

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  • 16.
    Hägglund, Maria
    et al.
    Department of Women’s and Children’s Health, Uppsala University, Sweden.
    Rexhepi, HanifeHögskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.Kane, BridgetInformation Systems, Karlstad University Business School, Sweden.Cajander, ÅsaDepartment of Information Technology, Uppsala University, Sweden.
    Personalized Digital Health and Patient-Centric Services2022Samlingsverk (redaktörskap) (Refereegranskat)
  • 17.
    Krasniqi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Persson, Anne
    Högskolan i Skövde, Forskningscentrum för Informationsteknologi. Högskolan i Skövde, Institutionen för kommunikation och information.
    Web-based Knowledge Portals in Swedish Healthcare: Overview and Challenges2012Ingår i: Scandinavian Conference on Health Informatics 2012 / [ed] Daniel Karlsson, Johan Gustav Bellika, Pia Britt Elberg, Mariann Fossum, Gert Galster, Gunnar Hartvigsen, Sabine Koch, Gunilla Nilsson, Linköping University Electronic Press, 2012, s. 9-12Konferensbidrag (Refereegranskat)
    Abstract [en]

    Healthcare organizations are increasingly becoming dependent on knowledge management activities to improve the quality of care, to maintain a high level of efficiency and innovation as well as to flexibly adapt to raid change. Utilizing knowledge management support systems - e.g. Internet based knowledge portals - to manage medical information and healthcare knowledge aimed to support the full spectrum of knowledge needs has become an important issue for all healthcare professionals. This paper reports on the main findings from analyzing the characteristics and challenges of 15 Swedish knowledge portals containing healthcare information. The analysis is based on inspection of the portals and interviews with their owners. The main challenges found concern fragmentation of knowledge, structuring of knowledge content, usability, interaction and resources for maintaining knowledge content. Future successful development and use of knowledge portals to disseminate healthcare knowledge depend on addressing these challenges, which requires portal owners to have a long-term strategy as well as a systematic way of working.

  • 18.
    Krasniqi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Persson, Anne
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Patients' Experiences of Communicating with Healthcare - an Information Exchange Perspective2011Ingår i: Proceedings of the 15th International Symposium on Health Information Management Research (ISHIMR 2011) / [ed] Bath, P. A., Mettler, T., Raptis, D. A. & Sen, B. A., University of Zurich , 2011, s. 241-251Konferensbidrag (Refereegranskat)
    Abstract [en]

    Aims: To explore on how patients experience the information exchange with healthcare organizations and how this relates to the six areas that constitute good quality care.Method: A qualitative approach inspired by Grounded Theory was adopted. Seven interviews with patients were carried out in the homes of patients.Conclusion: Healthcare does not always meet the requirements of Health and Medical Services Act with regard to good quality health. An effective exchange of information between health professionals and patients was found as a key issue for creating the conditions for good quality care.

  • 19.
    Kujala, Sari
    et al.
    Department of Computer Science, Aalto University, Espoo, Finland.
    Simola, Saija
    Department of Computer Science, Aalto University, Espoo, Finland.
    Wang, Bo
    Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway.
    Soone, Hedvig
    E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Estonia.
    Hagström, Josefin
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden; Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden.
    Bärkås, Annika
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Hörhammer, Iiris
    Department of Computer Science, Aalto University, Espoo, Finland.
    Cajander, Åsa
    Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden.
    Johansen Fagerlund, Asbjørn
    Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway.
    Kane, Bridget
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Karlstad University Business School, Sweden.
    Kharko, Anna
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden ; Medtech Science & Innovation Centre, Uppsala University Hospital, Sweden ; Faculty of Health, University of Plymouth, United Kingdom.
    Kristiansen, Eli
    Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway.
    Moll, Jonas
    Center for Empirical Research on Information Systems, Örebro University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Hägglund, Maria
    Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Sweden.
    Johansen, Monika A.
    Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway.
    Benchmarking usability of patient portals in Estonia, Finland, Norway, and Sweden2024Ingår i: International Journal of Medical Informatics, ISSN 1386-5056, E-ISSN 1872-8243, Vol. 181, artikel-id 105302Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    INTRODUCTION: Poor usability is a barrier to widespread adoption of electronic health records (EHR). Providing good usability is especially challenging in the health care context, as there is a wide variety of patient users. Usability benchmarking is an approach for improving usability by evaluating and comparing the strength and weaknesses of systems. The main purpose of this study is to benchmark usability of patient portals across countries. METHODS: A mixed-methods survey approach was applied to benchmark the national patient portals offering patient access to EHR in Estonia, Finland, Norway, and Sweden. These Nordic countries have similar public healthcare systems, and they are pioneers in offering patients access to EHR for several years. In a survey of 29,334 patients, both patients' quantitative ratings of usability and their qualitative descriptions of very positive and very negative peak experiences of portal use were collected. RESULTS: The usability scores ranged from good to fair level of usability. The narratives of very positive and very negative experiences included the benefits of the patient portals and experienced usability issues. The regression analysis of results showed that very positive and negative experiences of patient portal use explain 19-35% of the variation of usability scores in the four countries. The percentage of patients who reported very positive or very negative experiences in each country was unrelated to the usability scores across countries. CONCLUSIONS: The survey approach could be used to evaluate usability with a wide variety of users and it supported learning from comparison across the countries. The combination of quantitative and qualitative data provided an approximation of the level of the perceived usability, and identified usability issues to be improved and useful features that patients appreciate. Further work is needed to improve the comparability of the varied samples across countries. 

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  • 20.
    Moll, Jonas
    et al.
    Centre for Empirical Research on Information Systems, Örebro University School of Business, Örebro University, Sweden.
    Myreteg, Gunilla
    Department of Business Studies, Uppsala University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Experiences of Patients With Mental Health Issues Having Web-Based Access to Their Records: National Patient Survey2024Ingår i: JMIR Mental Health, E-ISSN 2368-7959, Vol. 11, nr 1, artikel-id e48008Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health issues (mean_mental health 3.38, SD_mental health 1.21; mean_others 3.52, SD_others 1.18; P=.02) believe that PAEHRs help them in shared decision-making compared to other patient groups. Conclusions: Patients with mental health issues who took part in the survey, as a group, express some minor differences in both the use of the PAEHR and their experiences regarding its usefulness, as compared to other patients, as a group. This patient group shows a slightly higher interest in 2 types of use: checking for accuracy of care in the record and blocking access to mental health notes for professionals from other parts of the health care system. Compared to other patient groups, these patients are less likely to experience that the PAEHR is a support in shared decision-making. The study indicates that the benefits of PAEHR on a general level are the same for this patient group as for other patients. The study does not support clinicians’ worry about possible harm to this patient group. Further research is however needed. 

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  • 21.
    Moll, Jonas
    et al.
    Centre for empirical research on information systems, Örebro University, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    The Effect of Patient Accessible Electronic Health Records on Communication and Involvement in Care: A National Patient Survey in Sweden2020Ingår i: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 270, s. 1056-1060Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    During recent years, patient accessible electronic health records (PAEHRs) have been implemented nationally in Sweden, as well as internationally, as a means of supporting patient engagement and shared decision making. Few studies have, however, investigated the long-term effects of PAEHRs on communicaiton with care professionals and involvement in care. The national survey study presented here, answered by 2587 patients in Sweden, focuses on these aspects specifically. The results show that the Swedish PAEHR system Journalen has had a positive impact on communication with care overall (84% agree or strongly agree with that communication with medical staff has improved), but only 31% agree or strongly agree with that the content of the PAEHR is discussed with care professionals. Journalen also seems to have a positive impact on involvement in care, but the results are mixed when it comes to effects on shared decision making.

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  • 22.
    Moll, Jonas
    et al.
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Grünloh, Christiane
    KTH Royal Institute of Technology, Stockholm, Sweden / Institute of Informatics, TH Köln University of Applied Sciences, Gummersbach, Germany.
    Huvila, Isto
    Department of ALM, Uppsala University, Uppsala, Sweden.
    Hägglund, Maria
    Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
    Myreteg, Gunilla
    Department of Information Technology, Uppsala University, Uppsala, Sweden / Department of Business Studies, Uppsala University, Uppsala, Sweden.
    Scandurra, Isabella
    Örebro University School of Business, Örebro, Sweden.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Patients’ Experiences of Accessing Their Electronic HealthRecords: National Patient Survey in Sweden2018Ingår i: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 20, nr 11, artikel-id e278Artikel i tidskrift (Refereegranskat)
    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.

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  • 23.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi.
    BRIDGING THE INFORMATION GAP: Supporting Evidence-Based Medicine and Shared Decision-Making through Information Systems2018Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    Practicing evidence-based medicine (EBM) and shared decision-making (SDM)along the patient process is important in today's healthcare environment, as thesemodels of care offer a way to improve quality and safety of care, patient satisfaction,and reduce costs. EBM is the conscientious and judicious use of current best medicalevidence in conjunction with clinical expertise. It also includes taking into accountpatient values and preferences to guide decisions about the care of individual patients.SDM offers a process that guides how a healthcare professional (e.g., a physicianor a nurse) and a patient jointly can participate in a decision after incorporatingthe body of evidence (the options, benefits and harms) and considering the patient'svalues and preferences.

    The degree to which healthcare professionals can practice EBM and SDM is dependentupon the availability of information about the patient (e.g., medical diagnosis,therapies as well as laboratory and administrative information) and medical evidence(such as medical guidelines). Patient information is a prerequisite for making decisionsabout the care of individual patients and it is evidence-based medicalknowledge, clinical expertise as well as patient values and preferences that guidethese decisions. Moreover, for patients to be able to communicate values and preferencesas well as participate effectively in their own care, they need to have a basicunderstanding of their condition and treatment options, and the consequences ofeach. Hence, they need access to the same information streams—in "patientaccessible"form—as their physician(s) and care team throughout their journey (process)in healthcare. However, making the right decisions about the care of individualpatients at the right time and place is a challenge for healthcare professionals. Due tointeroperability issues, existing information systems do not support a seamless flowof patient information along the patient process. Healthcare professionals are thereforeunable to easily access up-to-date information about the patient at the right timeand place. The situation is complicated further by the fragmentation of medical evidencein different repositories and its presentation by diverse providers, each withunique ideas about how information should be organized and how search enginesshould function. Limited or no access to relevant patient information and the bestmedical evidence about the benefits and risks of treatment options can result inflawed decisions and, more seriously, the suffering of patients. The situation also affectsSDM. If patients are not informed about their health condition, treatment options,benefits and risks or not given high quality information, e.g., becausehealthcare professionals do not have access to the best evidence, patients will be unIIable to assess 'what it is important to them', or they will make inadequate decisionsabout key issues. Consequently, it is almost impossible to practice EBM and SDM ineveryday clinical care.

    For EBM and SDM to serve their purpose, healthcare professionals and patients needinformation systems that provide quick and trouble-free access to all-round information.They also need information systems that can influence the patient/physicianrelationship and facilitate their pursuance of shared goals in the healthcare process,taking into account both illness and personal experience. Hence, based on a qualitativeapproach, this thesis proposes recommendations regarding the redesign of futurehealthcare information systems in ways that will facilitate, rather than hinder,the access to relevant information. One important recommendation identified is thatfuture healthcare information systems must support the core characteristics of EBMand SDM, in an integrated manner, and using the one without the other is notenough. However, such support requires the adoption of a process view on informationsystem development based on the patient's process. A process-oriented approachwith supporting information systems is thus vital for the support of an evidence-based practice where the patient is an important and active collaborator.Moreover, the challenges identified with regard to information system support arenot exclusively technical. Organizational culture, and the attitudes of healthcare professionalsto patient involvement are some of the biggest challenges facing healthcareorganizations.

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  • 24.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Improving healthcare information systems: A key to evidence based medicine2015Licentiatavhandling, sammanläggning (Övrigt vetenskapligt)
    Abstract [en]

    Delivering good quality care is a complex endeavor that is highly dependent on patient information and medical knowledge. When decisions about the care of a patient are made, they must, as far as possible, be based on research-derived evidence rather than on clinical skills and experience alone. Evidence based medicine (EBM) is the conscientious and judicious use of current best evidence in conjunction with clinical expertise as well as patient values and preferences to guide healthcare decisions. Following the principles of EBM, healthcare practitioners are required to formulate questions based on patients’ current clinical status, medical history, values and preferences, search the literature for answers, evaluate the evidence for its validity and usefulness, and finally apply the information to the patient. Information systems play a crucial role in the practice of evidence based medicine, by allowing healthcare practitioners to access clinical evidence and information about the patients’ health as they formulate their patient-care strategies. However, current information systems solutions are far from this perspective for various reasons. One of these reasons is that existing information systems do not support a seamless flow of patient information along the patient process. Due to interoperability issues, healthcare practitioners cannot easily exchange patient information from one information system to another and from one healthcare practitioner to another. Consequently, vital information that is stored in separate information systems and which could present a clear and complete picture of the patient cannot be easily accessed. All too often, units have to operate without knowledge of the problems addressed by other healthcare practitioners from other units, the services provided, medications prescribed, or preferences expressed in those previous situations. The practice of EBM is further complicated by current information systems that do not support practitioners in their search and evaluation of current evidence in everyday clinical care.

    Based on a qualitative approach, this work aims to find solutions for how future healthcare information systems can support the practice of EBM. By combining existing research on process orientation, knowledge management and evidence based medicine with empirical data, a number of recommendations have been initiated. These recommendations aim to support healthcare managers, IT–managers and system developers in the development of future healthcare information systems, from a process-oriented and knowledge management perspective. By following these recommendations, it is possible to develop information systems that facilitate the practice of evidence based medicine, and improve patient engagement.

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  • 25.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Information Systems for the Practice of Evidence-Based Medicine and Shared Decision Making2016Ingår i: Proceedings of the 10th European Conference on Information Systems Management: The University of Ebora, Portugal, 8-9 September 2016 / [ed] Paulo Silva, Rui Quaresma, António Guerreiro, Academic Conferences and Publishing International Limited, 2016, s. 258-270Konferensbidrag (Refereegranskat)
    Abstract [en]

    Evidence-based medicine (EBM) and shared decision making (SDM) are both essential for the quality of healthcare. Using information systems to support EBM and SDM has been proposed as one of the important initiatives to significantly improve quality of care. They play a crucial role by allowing healthcare practitioners to access information and clinical evidence while formulating their patient care strategies. They can also create new opportunities for patients to participate actively in their care. However, current information systems solutions are far away from this perspective for various reasons.  The aim of this paper is to present and illustrate how a prototype visualization of a process support system (PSS) can enhance the communication and collaboration among healthcare providers and patients by improving the access to patient information and medical knowledge, in so doing support the practice EBM and SDM. An important conclusion from this research is that a process support as the one described in this paper can reshape the practice of EBM and SDM.

  • 26.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Process oriented information systems: A key to evidence based medicine2015Ingår i: IADIS International Journal on Computer Science and Information Systems, E-ISSN 1646-3692, Vol. 10, nr 1, s. 64-79Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    The primary and basic component of healthcare is information. Being a healthcare practitioner involves using medical knowledge and patient information to deliver the best possible care. When decisions about the care of the patient are made they must as far as possible be based on research-derived evidence rather than on clinical skills and experience alone. This decision process is complex as evidence is infrequently available in a form that can be acted upon at the time decisions must be made. The aim of this paper is to present and illustrate how a prototype visualization of a process support system can support the availability of relevant medical knowledge in a way which seamlessly integrates with healthcare practitioners work practice, and thereby enables healthcare practitioners to work in accordance with EBM. An important conclusion from this research is that a process support as the one described in this paper can reshape the practice of EBM.

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  • 27.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Supporting evidence based medicine: A prototype for future healthcare information systems2015Ingår i: Information Systems 2015: Proceedings of the 8th IADIS International Conference, 2015, s. 185-195Konferensbidrag (Refereegranskat)
    Abstract [en]

    The primary and basic component of healthcare is information. Being a healthcare practitioner involves using medical knowledge and patient information to deliver the best possible care. When decisions about the care of the patient are made they must as far as possible be based on research-derived evidence rather than on clinical skills and experience alone. This decision process is complex as evidence is infrequently available in a form that can be acted upon at the time decisions must be made. The aim of this paper is to present and illustrate how a prototype visualization of a process support system can support the availability of relevant medical knowledge in a way which seamlessly integrates with healthcare practitioners work practice, and thereby enables healthcare practitioners to work in accordance with EBM. An important conclusion from this research is that a process support as the one described in this paper can reshape the practice of EBM

  • 28.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Cajander, Åsa
    Uppsala Universitet.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Huvila, Isto
    Uppsala Universitet.
    Cancerpatienter och användningen av journal via nätet2015Rapport (Övrigt vetenskapligt)
    Abstract [sv]

    I tre år har patienter i landstinget i Uppsala kunnat läsa sina journaler via nätet och haft tillgång till en rad eHälsotjänster såsom att följa remisser, se läkemedelslista och den lista med namn på vårdpersonal som använt deras journal. Att patienter skulle kunna fara illa när de får svåra besked via sin journal på nätet var en av många farhågor som Uppsala Allmänna Läkarföreningen (UAL) hade när projektet med direktåtkomst sjösattes hösten 2012 inom ramen för ett EU-projekt, SUSTAINS. Andra farhågor som UAL hade gällde att patienterna inte skulle förstå texten i journalen, och att de skulle bli oroade utan att ha möjlighet att fråga någon vårdpersonal om t ex provsvar. För att ta reda på patientens upplevelser av och förväntningar på e-tjänsten ”Min journal” genomfördes en intervjustudie med 30 cancerpatienter på Onkologen, Akademiska sjukhuset i Uppsala som en del av det Vinnovafinansierade DOME-projektet. Resultatet av intervjuerna ger en bra bild av varför patienter läser sin journal och använder eHälsotjänster samt varför man väljer att inte läsa sin journal. Bland annat framgår av resultatet att en stor majoritet av patienterna är positiva till tjänsten och upplever att det finns en nytta med att kunna läsa sin journal. Bland annat tycks tillgången till journalen förbättra möjligheten till förberedelser inför ett läkarbesök och öka tryggheten och delaktigheten i den egna vården. Även de patienter som inte har erfarenheter av att läsa sin journal via nätet ser en viktig nytta med tjänsten. Vidare upplever några patienter en oro över att obehöriga ska få tillgång till informationen. Det finns dock en underliggande förväntan hos samtliga patienter att e-tjänsten håller hög säkerhetsnivå. Av studien kan man dra slutsatsen att det finns ett behov av att studera hur e-tjänsten ”Min journal” kan länkas med övriga eHälsotjänster som ett led i att effektivisera tillgången till information.

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  • 29.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Huvila, Isto
    Uppsala University, Sweden ; Åbo Akademi University, Finland.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Cajander, Åsa
    Uppsala University, Sweden.
    Cancer patients’ information seeking behavior related to online electronic healthcare records2021Ingår i: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 27, nr 3, s. 1-12Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Patients’ online access to their EHR together with the rapid proliferation of medical information on the Internet has changed how patients use information to learn about their health. Patients’ tendency to turn to the Internet to find information about their health and care is well-documented. However, little is known about patients’ information seeking behavior when using online EHRs. By using information horizons as an analytical tool this paper aims to investigate the information behavior of cancer patients who have chosen to view their EHRs (readers) and to those who have not made that option (non-readers). Thirty interviews were conducted with patients. Based on information horizons, it seems that non-reading is associated with living in a narrower information world in comparison to readers. The findings do not suggest that the smallness would be a result of active avoidance of information, or that it would be counterproductive for the patients. The findings suggest, however, that EHRs would benefit from comprehensive linking to authoritative health information sources to help users to understand their contents. In parallel, healthcare professionals should be more aware of their personal role as a key source of health information to those who choose not to read their EHRs. 

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  • 30.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Huvila, Isto
    Department of ALM, Uppsala University, Sweden ; Information Studies, Åbo Akademi University, Finland.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Sweden.
    Cancer patients' information seeking behaviour related to online electronic healthcare records2022Ingår i: Proceedings of the 18th International Symposium on Health Information Management Research / [ed] Peter Bath; Päivi Jokela; Laura Sbaffi, Kalmar: Linnaeus University; University of Sheffield , 2022Konferensbidrag (Refereegranskat)
    Abstract [en]

    Patients’ online access to their EHR together with the rapid proliferation of medical information on theInternet has changed the way patients use the information to learn about their health. It is welldocumented that patients often turn to the Internet to find information about their health and care.However, little is known about patients´ information seeking behaviour when using online EHRs. Byusing information horizons as an analytical tool this paper aims to investigate the informationbehaviour of cancer patients who have chosen to view their EHRs (readers) and to those who havenot made that option (non-readers). Thirty interviews were conducted with patients. Based oninformation horizons, it seems that non-reading is associated with living in a narrower informationworld in comparison to readers. The findings do not suggest that the smallness would be a result of anactive avoidance of information, or that it would be counterproductive for the patients.

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  • 31.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Moll, Jonas
    Örebro University School of Business, Sweden.
    Huvila, Isto
    Uppsala University, Sweden.
    Online electronic healthcare records: Comparing the views of cancer patients and others2020Ingår i: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 26, nr 4, s. 2915-2929Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This study investigates differences in attitudes towards, and experiences with, online electronic health records between cancer patients and patients with other conditions, highlighting what is characteristic to cancer patients. A national patient survey on online access to electronic health records was conducted, where cancer patients were compared with all other respondents. Overall, 2587 patients completed the survey (response rate 0.61%). A total of 347 respondents (13.4%) indicated that they suffered from cancer. Results showed that cancer patients are less likely than other patients to use online electronic health records due to general interest (p < 0.001), but more likely for getting an overview of their health history (p = 0.001) and to prepare for visits (p < 0.001). Moreover, cancer patients rate benefits of accessing their electronic health records online higher than other patients and see larger positive effects regarding improved communication with and involvement in healthcare. 

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  • 32.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Moll, Jonas
    Örebro University School of Business, Sweden.
    Huvila, Isto
    Uppsala University, Sweden ; Åbo Akademi University, Finland.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Do you want to receive bad news through your patient accessible electronic health record?: A national survey on receiving bad news in an era of digital health2021Ingår i: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 27, nr 3, artikel-id 14604582211035817Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Despite the fact that patient accessible electronic health records (PAEHRs) have been around for many years in several countries, there is a lack of research investigating patient’s preferences for receiving bad news, including through PAEHRs. Little is also known about the characteristics of the patients who prefer to receive bad news through the PAEHR in terms of, for example medical diagnosis, age and educational level. This study, based on a national patient survey in Sweden (N = 2587), investigated this. Results show that, generally, receiving bad news by reading in the PAEHR is still among the least preferred options. Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women (p = 0.001), and the same goes for those who are not working/have worked in healthcare (p = 0.007). An effect of disease groups was also found, showing that diabetes patients in particular, want to receive bad news through the PAEHR. 

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  • 33.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Moll, Jonas
    Örebro University School of Business, Sweden.
    Huvila, Isto
    Department of ALM, Uppsala University, Sweden ; Information Studies, Åbo Akademi University, Finland.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningsmiljön Informationsteknologi.
    Do you want to receive bad news through your patient accessible electronic health record?: A national survey on receiving bad news in an era of digital health2022Ingår i: Proceedings of the 18th International Symposium on Health Information Management Research / [ed] Peter Bath; Päivi Jokela; Laura Sbaffi, Kalmar: Linnaeus University; University of Sheffield , 2022Konferensbidrag (Refereegranskat)
    Abstract [en]

    Despite the fact that patient accessible electronic health records (PAEHRs) have been around for manyyears in several countries, there is a lack of research investigating patient´ preferences for receiving badnews, including through PAEHRs. Little is also known about the characteristics of the patients who preferto receive bad news through the PAEHR in terms of e.g. medical diagnosis, age and educational level.This study, based on a national patient survey in Sweden (N=2587), investigated this. Results showthat, generally, receiving bad news by reading in the PAEHR is still among the least preferred options.Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women(p=0.001), and the same goes for those who are not working/have worked in healthcare (p=0.007). Aneffect of disease groups was also found, showing that diabetes patients in particular, want to receivebad news through the PAEHR.

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  • 34.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Persson, Anne
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Challenges to Implementing IT Support for Evidence Based Practice Among Nurses and Assistant Nurses: A Qualitative Study2017Ingår i: Journal of Electronic Commerce in Organizations, ISSN 1539-2937, E-ISSN 1539-2929, Vol. 15, nr 2, s. 61-76Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    When practitioners make decisions as well as treat and care for patients they interpret patient specific information according to evidence based medical knowledge. This process is complex as evidence is infrequently available in a form that can be acted upon at the time decisions must be made. The aim of this paper is to (1) explore how primary, secondary and municipality care in Sweden work with the process of managing knowledge, (2) explore how nurses and assistant nurses experience availability of medical knowledge when and where they need it and (3) conditions for developing a coherent IT-based knowledge portal for different areas of knowledge bases in healthcare. The results show significant deficiencies in the knowledge management process of the participating organizations. The knowledge management processes are not embedded in business processes, activities and relationships, which cause major difficulties for practitioners to keep up with the latest medical evidence.

  • 35.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Persson, Anne
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Worlds Apart - IT Support Strategies for Evidence Based Medicine Meet Reality2016Ingår i: Proceedings of the 9th IADIS International Conference on Information Systems, 2016, 9–11 April, Vilamoura, Algarve, Portugal / [ed] Miguel Baptista Nunes, Pedro Isaías, Philip Powell, IADIS Press, 2016, s. 3-10Konferensbidrag (Refereegranskat)
    Abstract [en]

    When practitioners make decisions as well as treat and care for patients they interpret patient specific information according to evidence based medical knowledge. This process is complex as evidence is infrequently available in a form that can be acted upon at the time decisions must be made. The aim of this paper is to (1) explore how primary, secondary and municipality care in Sweden work with the process of managing knowledge, (2) explore how healthcare practitioners’ experience, availability of medical knowledge when and where they need it and (3) conditions for developing a coherent IT-based knowledge portal for different areas of knowledge bases in healthcare. The results show significant deficiencies in the knowledge management process of the participating organizations. The knowledge management processes are not embedded in business processes, activities and relationships, which cause major difficulties for practitioners to keep up with the latest medical evidence.

  • 36.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Cajander, Åsa
    Department of Information Technology, Uppsala University.
    Huvila, Isto
    Department of ALM, Uppsala University.
    Cancer Patients’ Attitudes and Experiences of Online Access to their Electronic Medical Records: A Qualitative Study2018Ingår i: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 24, nr 2, s. 115-124Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Patients’ access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this paper is to provide in-depth understanding of cancer patients’ attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching e-Health services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital

  • 37.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Cajander, Åsa
    Uppsala University, Department of Information Technology, Uppsala, Sweden.
    Huvila, Isto
    Uppsala University, Department of ALM, Åbo Akademi University, Finland.
    Cancer Patients’ Attitudes and Experiences of Online Medical Records2015Ingår i: Proceedings of the 17th International Symposium on Health Information Management Research – ISHIMR 2015, 2015, s. 19-25Konferensbidrag (Refereegranskat)
    Abstract [en]

    Patients’ access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this paper is therefore to provide in-depth understanding of cancer patients’ attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching eHealth services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital.

  • 38.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Persson, Anne
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Challenges and Opportunities with Information System Support for Healthcare Processes: a Healthcare Practitioner Perspective2015Ingår i: Proceedings of the 8th IADIS International Conference Information Systems 2015, IS 2015, 2015, s. 61-69Konferensbidrag (Refereegranskat)
    Abstract [en]

    Healthcare processes require the cooperation of different healthcare providers and medical disciplines. In such an environment, the quality and safety of care rely heavily on the ability to exchange information from one software to another, and from one person to another. However, information systems that support a seamless flow of information along healthcare processes are not broadly used in healthcare environments. Usually, healthcare organizations have their own autonomously developed information systems that do not support the cooperation of different organizational units and medical disciplines. This has led to the fragmentation of the patients’ information in proprietary heterogeneous systems across healthcare organizations. The aim of this paper is to: (1) explore how healthcare practitioners´ in Sweden experience information system support in their daily work activities, and (2) present and illustrate how key design principles of a process support system prototype can support healthcare practitioners in their work practice. An important conclusion from this research is that a process support as the one described in this paper creates new opportunities to organize and coordinate healthcare

  • 39.
    Rexhepi, Hanife
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Persson, Anne
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Towards effective and efficient information system support for healthcare processes: A healthcare practitioner perspective2015Ingår i: IADIS International Journal on Computer Science and Information Systems, E-ISSN 1646-3692, Vol. 10, nr 1, s. 80-96Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Healthcare processes require the cooperation of different healthcare providers and medical disciplines. In such an environment, the quality and safety of care rely heavily on the ability to exchange information from one software to another, and from one person to another. However, information systems that support a seamless flow of information along healthcare processes are not broadly used in healthcare environments. Usually, healthcare organizations have their own autonomously developed information systems that do not support the cooperation of different organizational units and medical disciplines. This has led to the fragmentation of the patients’ information in proprietary heterogeneous systems across healthcare organizations. The aim of this paper is to: (1) explore how healthcare practitioners´ in Sweden experience information system support in their daily work activities, and (2) present and illustrate how key design principles of a process support system prototype can support healthcare practitioners in their work practice. An important conclusion from this research is that a process support as the one described in this paper creates new opportunities to organize and coordinate healthcare.

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  • 40.
    Åhlfeldt, Rose-Mharie
    et al.
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Persson, Anne
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Krasniqi, Hanife
    Högskolan i Skövde, Institutionen för kommunikation och information. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Wåhlander, Kalle
    Visuera Integration AB, Sankt Erikssgatan 117, SE-113 43 Stockholm.
    Supporting Active Patient and Healthcare Collaboration - A Prototype for Future Healthcare Information Systems2013Ingår i: Proceedings of the 16th International Symposium on Health Information Management Research (ISHIMR 2013). Halifax, June 26-28 2013 / [ed] Syed Sibte Raza Abidi; Peter A. Bath, 2013, s. 13-23Konferensbidrag (Refereegranskat)
    Abstract [en]

    This paper presents and illustrates the main features of a proposed process oriented approach for patient information distribution in future healthcare information systems by using a prototype of a process support system. The development of the prototype was based on Visuera method which includes five various steps. The results indicate that a visualised prototype is a suitable tool for illustrating both the opportunities and constraints of future ideas and solutions in eHealth. The main challenges for developing and implementing a fully functional process support system are both on a technical and organisational/management level.

  • 41.
    Åhlfeldt, Rose-Mharie
    et al.
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Persson, Anne
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Rexhepi, Hanife
    Högskolan i Skövde, Institutionen för informationsteknologi. Högskolan i Skövde, Forskningscentrum för Informationsteknologi.
    Wåhlander, Kalle
    Visuera Integration AB, Sweden.
    Supporting Active Patient and Health Care Collaboration: A Prototype for Future Health Care Information Systems2016Ingår i: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 22, nr 4, s. 839-853Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This article presents and illustrates the main features of a proposed process-oriented approach for patient information distribution in future health care information systems, by using a prototype of a process support system. The development of the prototype was based on the Visuera method, which includes five defined steps. The results indicate that a visualized prototype is a suitable tool for illustrating both the opportunities and constraints of future ideas and solutions in e-Health. The main challenges for developing and implementing a fully functional process support system concern both technical and organizational/management aspects.

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