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Rexhepi, H., Åhlfeldt, R.-M., Cajander, Å. & Huvila, I. (2018). Cancer Patients’ Attitudes and Experiences of Online Access to their Electronic Medical Records: A Qualitative Study. Health Informatics Journal, 24(2), 115-124
Open this publication in new window or tab >>Cancer Patients’ Attitudes and Experiences of Online Access to their Electronic Medical Records: A Qualitative Study
2018 (English)In: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 24, no 2, p. 115-124Article in journal (Refereed) Published
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

Place, publisher, year, edition, pages
Sage Publications, 2018
Keywords
Electronic medical records, medical information, patient access, patient empowerment
National Category
Information Systems, Social aspects
Research subject
Humanities and Social sciences; Information Systems
Identifiers
urn:nbn:se:his:diva-12806 (URN)10.1177/1460458216658778 (DOI)000432068300001 ()27440056 (PubMedID)2-s2.0-85046829118 (Scopus ID)
Available from: 2016-08-22 Created: 2016-08-22 Last updated: 2019-01-22Bibliographically approved
Moll, J., Rexhepi, H., Cajander, Å., Grünloh, C., Huvila, I., Hägglund, M., . . . Åhlfeldt, R.-M. (2018). Patients’ Experiences of Accessing Their Electronic HealthRecords: National Patient Survey in Sweden. Journal of Medical Internet Research, 20(11), Article ID e278.
Open this publication in new window or tab >>Patients’ Experiences of Accessing Their Electronic HealthRecords: National Patient Survey in Sweden
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2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 11, article id e278Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
J M I R Publications, Inc., 2018
Keywords
eHealth, medical records, national survey, patients, patient-accessible electronic health records, patient portal, personal health records
National Category
Computer and Information Sciences
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-16430 (URN)10.2196/jmir.9492 (DOI)000450280900001 ()30389647 (PubMedID)2-s2.0-85056037728 (Scopus ID)
Projects
DOME
Available from: 2018-11-24 Created: 2018-11-24 Last updated: 2019-11-20Bibliographically approved
Grünloh, C., Myreteg, G., Cajander, Å. & Rexhepi, H. (2018). "why do they need to check me?" patient participation through ehealth and the doctor-patient relationship: Qualitative study. Journal of Medical Internet Research, 20(1), Article ID e11.
Open this publication in new window or tab >>"why do they need to check me?" patient participation through ehealth and the doctor-patient relationship: Qualitative study
2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 1, article id e11Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
J M I R Publications, Inc., 2018
Keywords
Doctor-Patient Relationship, Ehealth Services For Patients, Medical Records, Patient Accessible Electronic Health Records, Patient Empowerment, Patient Participation, Patient Portal, Personal Health Records, Physicians, adult, article, decision making, electronic health record, electronic patient record, empowerment, genetic transcription, human, learning, monitoring, qualitative research, responsibility, semi structured interview, skill, telehealth, thematic analysis
National Category
Information Systems, Social aspects Human Aspects of ICT Information Systems Computer Sciences Computer Systems
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-14750 (URN)10.2196/jmir.8444 (DOI)000422942900010 ()29335237 (PubMedID)2-s2.0-85041078505 (Scopus ID)
Available from: 2018-02-16 Created: 2018-02-16 Last updated: 2019-11-20Bibliographically approved
Rexhepi, H. & Persson, A. (2017). Challenges to Implementing IT Support for Evidence Based Practice Among Nurses and Assistant Nurses: A Qualitative Study. Journal of Electronic Commerce in Organizations, 15(2), 61-76
Open this publication in new window or tab >>Challenges to Implementing IT Support for Evidence Based Practice Among Nurses and Assistant Nurses: A Qualitative Study
2017 (English)In: Journal of Electronic Commerce in Organizations, ISSN 1539-2937, E-ISSN 1539-2929, Vol. 15, no 2, p. 61-76Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
I G I Global, 2017
Keywords
Evidence based medicine, Nursing, Knowledge management, Healthcare information systems, Healthcare knowledge management
National Category
Computer and Information Sciences
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-13463 (URN)10.4018/JECO.2017040105 (DOI)000408645700006 ()2-s2.0-85016057982 (Scopus ID)
Available from: 2017-03-30 Created: 2017-03-30 Last updated: 2019-11-21Bibliographically approved
Gruenloh, C., Haslwanter, J. D. H., Kane, B., Lee, E., Lind, T., Moll, J., . . . Scandurra, I. (2017). Using Critical Incidents in Workshops to Inform eHealth Design. In: Regina Bernhaupt, Girish Dalvi, Anirudha Joshi, Devanuj K. Balkrishan, Jacki O'Neill, Marco Winckler (Ed.), Human-Computer Interaction – INTERACT 2017: 16th IFIP TC 13 International Conference Mumbai, India, September 25–29, 2017 Proceedings, Part I. Paper presented at 16th IFIP TC 13 International Conference on Human-Computer Interaction (INTERACT), Mumbai, India, September 25-29, 2017 (pp. 364-373). Cham: Springer
Open this publication in new window or tab >>Using Critical Incidents in Workshops to Inform eHealth Design
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2017 (English)In: 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, p. 364-373Conference paper, Published paper (Refereed)
Abstract [en]

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

Place, publisher, year, edition, pages
Cham: Springer, 2017
Series
Lecture Notes in Computer Science, ISSN 0302-9743, E-ISSN 1611-3349 ; 10513
Keywords
Method, Workshop format, Design, Development, eHealth, Critical incidents, Stakeholders, Reflective practice, Evaluation
National Category
Human Aspects of ICT Human Computer Interaction
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-16518 (URN)10.1007/978-3-319-67744-6_24 (DOI)000452466200024 ()2-s2.0-85030685097 (Scopus ID)978-3-319-67744-6 (ISBN)978-3-319-67743-9 (ISBN)
Conference
16th IFIP TC 13 International Conference on Human-Computer Interaction (INTERACT), Mumbai, India, September 25-29, 2017
Available from: 2018-12-20 Created: 2018-12-20 Last updated: 2019-03-15Bibliographically approved
Rexhepi, H. (2016). Information Systems for the Practice of Evidence-Based Medicine and Shared Decision Making. In: Paulo Silva, Rui Quaresma, António Guerreiro (Ed.), Proceedings of the 10th European Conference on Information Systems Management: The University of Ebora, Portugal, 8-9 September 2016. Paper presented at 10th European Conference on Information Systems Management: ECISM, Evora, Portugal, September 8-9, 2016 (pp. 258-270). Academic Conferences and Publishing International Limited
Open this publication in new window or tab >>Information Systems for the Practice of Evidence-Based Medicine and Shared Decision Making
2016 (English)In: 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, p. 258-270Conference paper, Published paper (Refereed)
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.

Place, publisher, year, edition, pages
Academic Conferences and Publishing International Limited, 2016
Series
-, ISSN 2048-8912
Keywords
Process support systems, patient empowerment, evidence based medicine, shared decision making
National Category
Information Systems
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-13419 (URN)000400275000031 ()2-s2.0-85016128883 (Scopus ID)978-1-911218-05-0 (ISBN)
Conference
10th European Conference on Information Systems Management: ECISM, Evora, Portugal, September 8-9, 2016
Available from: 2017-03-08 Created: 2017-03-08 Last updated: 2019-01-22Bibliographically approved
Åhlfeldt, R.-M., Persson, A., Rexhepi, H. & Wåhlander, K. (2016). Supporting Active Patient and Health Care Collaboration: A Prototype for Future Health Care Information Systems. Health Informatics Journal, 22(4), 839-853
Open this publication in new window or tab >>Supporting Active Patient and Health Care Collaboration: A Prototype for Future Health Care Information Systems
2016 (English)In: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 22, no 4, p. 839-853Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Sage Publications, 2016
Keywords
e-health services, patient centred care, process oriented approach, process support systems, prototype development
National Category
Information Systems
Research subject
Technology; Information Systems
Identifiers
urn:nbn:se:his:diva-11377 (URN)10.1177/1460458215590862 (DOI)000389055600005 ()26261220 (PubMedID)2-s2.0-84995777290 (Scopus ID)
Projects
Vårdens framtida informationsssystem
Available from: 2015-08-19 Created: 2015-08-19 Last updated: 2019-01-23Bibliographically approved
Rexhepi, H. & Persson, A. (2016). Worlds Apart - IT Support Strategies for Evidence Based Medicine Meet Reality. In: Miguel Baptista Nunes, Pedro Isaías, Philip Powell (Ed.), Proceedings of the 9th IADIS International Conference on Information Systems, 2016, 9–11 April, Vilamoura, Algarve, Portugal: . Paper presented at 9th IADIS International Conference on Information Systems, 2016, 9–11 April, Vilamoura, Algarve, Portugal (pp. 3-10). IADIS Press
Open this publication in new window or tab >>Worlds Apart - IT Support Strategies for Evidence Based Medicine Meet Reality
2016 (English)In: 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, p. 3-10Conference paper, Published paper (Refereed)
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.

Place, publisher, year, edition, pages
IADIS Press, 2016
Keywords
Knowledge management, evidence based medicine, healthcare knowledge management
National Category
Information Systems, Social aspects
Research subject
Humanities and Social sciences; Information Systems
Identifiers
urn:nbn:se:his:diva-12804 (URN)2-s2.0-84976427825 (Scopus ID)978-989-8533-50-0 (ISBN)978-1-5108-2369-3 (ISBN)
Conference
9th IADIS International Conference on Information Systems, 2016, 9–11 April, Vilamoura, Algarve, Portugal
Available from: 2016-08-22 Created: 2016-08-22 Last updated: 2019-03-05Bibliographically approved
Rexhepi, H., Åhlfeldt, R.-M., Cajander, Å. & Huvila, I. (2015). Cancer Patients’ Attitudes and Experiences of Online Medical Records. In: Proceedings of the 17th International Symposium on Health Information Management Research – ISHIMR 2015: . Paper presented at The 17th International Symposium on Health Information Management Research – ISHIMR 2015, York, 25-26 June 2015 (pp. 19-25).
Open this publication in new window or tab >>Cancer Patients’ Attitudes and Experiences of Online Medical Records
2015 (English)In: Proceedings of the 17th International Symposium on Health Information Management Research – ISHIMR 2015, 2015, p. 19-25Conference paper, Published paper (Refereed)
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.

Series
Proceedings of the 17th International Symposium on Health Information Management Research, ISSN 2048-4712
Keywords
Electronic medical records, medical information, patient access, patient empowerment
National Category
Information Systems, Social aspects
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-11429 (URN)
Conference
The 17th International Symposium on Health Information Management Research – ISHIMR 2015, York, 25-26 June 2015
Available from: 2015-08-26 Created: 2015-08-26 Last updated: 2019-01-22Bibliographically approved
Rexhepi, H., Cajander, Å., Åhlfeldt, R.-M. & Huvila, I. (2015). Cancerpatienter och användningen av journal via nätet. Skövde: Högskolan i Skövde
Open this publication in new window or tab >>Cancerpatienter och användningen av journal via nätet
2015 (Swedish)Report (Other academic)
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.

Place, publisher, year, edition, pages
Skövde: Högskolan i Skövde, 2015. p. 22
Series
IIT Technical Reports ; HS-IIT-TR-15-003
National Category
Computer and Information Sciences
Research subject
Technology; Information Systems
Identifiers
urn:nbn:se:his:diva-11726 (URN)
Projects
DOME
Funder
VINNOVA, 2013-04518
Available from: 2015-11-28 Created: 2015-11-28 Last updated: 2019-01-23Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-8957-9853

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