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- Grünloh, Christiane, et al.
(author)
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Patient Empowerment Meets Concerns for Patients : a Study of Patient Accessible Electronic Health Records in Sweden
- 2016
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In: Exploring Complexity in Health. - : IOS Press. - 9781614996774 - 9781614996781
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Conference paper (peer-reviewed)abstract
- BackgroundAs part of a EU project, the Swedish county Uppsala launched a patient portal, Journalen in 2012 [1]. Patients can now access their Electronic Health Records (EHR) online, which is aimed to increase patient empowerment. The medical professionals reacted strongly on patients accessing the medical records. Main concerns were related to quality of care, the effect on their work environment, providing bad news through the eHealth service, and also the wellbeing of patients. While the opportunities of implementing these e-health services seem promising, the concerns of the medical professionals have to be understood and addressed, as well as the actual use of the system by patients. This presentation integrates results from two interview studies with physicians and patients related to patients accessing their medical records online [2,3].MethodThe presented results are synthesis of the interviews studies with 12 physicians [2] and 30 patients [3], which took place about 6–12 months after the launch of the portal. The synthesis presented in this paper focus on Technological Frames [4] of physicians and patients including the attitudes and experiences in relation to possible (1) anxiety creation, (2) increased of workload, and (3) the general value of patients reading medical records.Results Anxiety creation due to receiving bad news. Many physicians believe that breaking bad news to patients during a patient encounter is vital as this would give them the possibility to also explain treat- ments and answer questions. Somewhat unexpectedly, some patients preferred receiving bad news through Journalen instead of waiting for the physicians. The patients argue that waiting times causes more anxiety. The choice of not accessing is also important, as there are patients who do not want to receive bad news before a patient encounter. Workload increases. Many physicians are worried about the work- load of doctors, as reading the medical record online may result in increased number of phone calls because of anxious patients. However, many patients did not tend to take any additional contacts to ask questions. Some of the patients even believe that access to their medical records reduces the number of contacts with healthcare. Usefulness of accessing online. Many physicians are concerned that online access will have a negative impact on the patient such as increased anxiety and misconceptions as they lack understanding of medical terms. Unlike the doctors’ perspective, many patients argue that they do not have major difficulties in understanding the contents. They also argue that Journalen was central to their coping with their decease.Conclusion From this study it is clear that the Technological Frames of physicians differ from those of patients, and that they have different attitudes and experiences towards the system. The intention from the politicians was that the system would contribute to Patient Empowerment, but that framing of the technology differs from the physicians’ view, as they are concerned of the consequences. More research is needed on the framing of the technology and how that has been changed after the launch of the system.[1] Erlingsdottir, G., Lindholm, C. When patient empowerment encounters professional autonomy: The conflict and negotiation process of inscribing an eHealth service. Scandinavian journal of public administration 2015;19(29):27- 48.[2] Grünloh, C., Cajander, Å., Myreteg, G., “The Record is our Work Tool!” - Physicians’ Framing of a Patient Portal in Sweden. J Med Internet Res (submitted).[3] Rexhepi, H., Åhlfeldt, R.-M., Cajander, Å, & Huvila, I. (2015). Cancer Patients’ Attitudes and Experiences of Online Medical Records, 1–8. Proceedings of the 17th International Symposium on Health Information Management Research ISHIMR 2015.[4] Orlikowski, W.J., Gash, D.C. Technological Frames: Making sense of information technology in organizations. Transactions on Information Systems 1994;12(2):174–207. doi: 10.1145/196734.196745
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| 3. |
- Huvila, Isto, et al.
(author)
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Empowerment or anxiety? : Research on deployment of online medical e-health services in Sweden
- 2013
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In: Bulletin of the American Society for Information Science and Technology. - : John Wiley & Sons. - 1931-6550 .- 1550-8366 .- 0095-4403. ; 39:5, s. 30-33
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Journal article (peer-reviewed)abstract
- As early e-health efforts progress, it is critical to step back to study their effectiveness and inform expanded implementation. The DOME project is a Swedish research initiative to examine the methods and implications of providing patients access to their own medical records and other e-health services. The focus is on SUSTAINS, a patient access system established in 2012 in 11 European countries. Sweden’s Uppsala county opened access to residents to view their electronic health records with provider notes, lab results, diagnoses and treatments in late 2012. Pre- and post-implementation studies are being carried out through DOME and mixing with the public debate on benefits and drawbacks of easy online access to personal health information. Supporters and critics share concern for quality of care and data security. But advocates focus on better decisions by empowered patients, while detractors, including many healthcare providers, see patient anxiety resulting from insufficient information and lack of consultation. The DOME project is providing the opportunity to analyze all sides of expanded access to electronic health records.
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| 4. |
- Moll, Jonas, et al.
(author)
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Patients’ Experiences of Accessing Their Electronic Health Records: Results of a National Patient Survey in Sweden
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In: Journal of Medical Internet Research. - 1438-8871.
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Journal article (peer-reviewed)abstract
- Background: Internationally, there is a movement toward providing patients online access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens the possibility to access their medical information online. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients’ experiences of using PAEHRs in Sweden or Europe, more generally.Objectives: The objective of our study was to investigate patients’ experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chisquare tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one’s health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way—several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.
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| 5. |
- Moll, Jonas, 1982-, et al.
(author)
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Patients’ Experiences of Accessing Their Electronic HealthRecords : National Patient Survey in Sweden
- 2018
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In: Journal of Medical Internet Research. - : J M I R Publications, Inc.. - 1438-8871. ; 20:11
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Journal article (peer-reviewed)abstract
- 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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