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The national government establishes health and medical care principles and guidelines, setting policy priorities through laws, ordinances, or agreements with the Swedish Association of Local Authorities and Regions (SKR).
The 21 regions organize health and medical care to ensure universal access.
The 290 municipalitieshandle care for the elderly, individuals with physical and mental disabilities, post-therapy support, and school health care.
Two important pillars of the ehalth strategy in Sweden are E-hälsomyndigheten (eHM), which is the Swedish eHealth Agency, and Inera AB, a government entity, is company owned by all Regions, Municipalities and Swedish Association of Local Authorities and Regions (SKR). These two sometimes work together
The Swedish eHealth Agency is a government entity dedicated to digitalizing and enhancing the exchange of information among patients, the healthcare system, and pharmacies within the country.
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The agency provides various e-health services and digital solutions for individuals and professionals in healthcare and social services. Its e-prescription service and Covid certificates service have gained widespread recognition. Functioning as the coordinator of the government's e-health initiatives, the agency also monitors advancements in the e-health sector on national and international scales.
The Agency is in fact focused on e-prescriptions, and it was also tasked by the Ministry of social welfare for the creation of the Covid certification during the pandemic. Its responsibilities are:
carrying out the government's e-health initiatives,
storing digital prescriptions from doctors and forwarding them to pharmacies,
It offers a Medicine Check service that allows patients to view information about their prescriptions, and view whether they are eligible for the high-cost protection card (if patients receive this, they don’t pay for medicines for a set period),
collecting information about the quantities of and which medicines have been sold in Sweden,
offering the Electronic Expert Support service to help pharmacies check whether prescription medicines work
together (Welcome to the Swedish eHealth Agency, n.d.)
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Public vs private
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The national PHR
History
Journalen is the national PHR in Sweden . This is defined in the country as a Patient-Accessible Electronic Health Record (PAEHR), and can be accessed via the national health care portal 1177.se. Journalen integrates EHR information from diverse systems used across Swedish healthcare organisations through a national health information exchange platform. The first region connected to the national infrastructure in 2012, and all of the others followed, with the last one connected in 2018 (Hägglund, Scandurra 2022).
The national patient portal, 1177.se, serves as a comprehensive healthcare access point, connecting to all EHR systems across the 21 regions. Utilizing a national e-ID for authentication, users gain access to administrative services and the PAEHR Journalen. Despite regional autonomy in prioritizing eHealth services, the national eHealth strategy mandates a unified online healthcare access point. The portal operates on a national health information exchange (HIE) platform, enabling access to data stored in any of the EHR systems.
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Inera is a “digitization company that, on behalf of municipalities and regions, contributes to the development of welfare.” Inera’s eHealth strategy is based on:
National Patient Overview (NPÖ), which allows healthcare providers to see and share patient information securely across different regions.
1177 and Journalen, which are designed to offer support and engage citizens. (Inera, 2024).
The remainder of this chapter will focus on 1177, with particular emphasis on Journalen, which serves as Sweden's national Personal Health Record (PHR).
Public vs private
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The national PHR
History
Inera AB, owned by the regions, municipalities and by the Swedish association of local authorities and regions, manages the national patient portal 1177.se (Cijvat, Cornet and Hägglund, 2021). The portal comprises three key components: a telephone advice service (1177 on the phone), a web-based information platform (1177.se on the web), and personalized eHealth services (1177.se personal eHealth services) accessible through authentication. The latter is the patient portal with functionality varying based on region or healthcare provider a Personal Health Record. The latter, accessible through e-ID authentication, is called Journalen, and is in fact the national Personal Health Record in Sweden.(Hägglund, Blease & Scandurra, 2020).The Swedish government, in
Journalen integrates Electronic Health Record (EHR) information from various systems used by Swedish healthcare organisations through a national health information exchange platform. Journalen started as a project in the Uppsala region, and then other regions decided they wanted it as well, so Uppsala handed the project over to Inera. The first region connected to this infrastructure in 2012, with the final region joining in 2018, although features stil vary depending on the region or healthcare provider (Hägglund, Scandurra 2022). Journalen is n serves as a comprehensive healthcare access point, connecting to all EHR systems across the 21 regions.
In collaboration with the Swedish Association of Local Authorities and Regions (SALAR), the Swedish government has formulated outlined a vision for the its national e-Health eHealth strategy. By 2025, the goal aim is for Sweden to establish Sweden as become a global leader in leveraging digitization utilising digitalisation and eHealth for improved to enhance health and welfare, fostering while promoting individuals' independence.
eHealth is deeply integrated into embedded in Sweden's healthcare sectorsystem, with annual investments of around $1.22 billion in healthcare IT across all regions. Electronic health record solutions are universally adopted, with 99 percent of prescriptions issued electronically. The COVID-19 pandemic further accelerated the growth adoption of digital health services, with digital consultations doubling in 2020, representing 11 percent of total all medical appointments (International Trade Administration, U.S. Department of Commerce, 2023).
Inera AB, a company owned by the Swedish regional governments, manages the national patient portal 1177.se, including the PAEHR Journalen (Cijvat, Cornet and Hägglund, 2021).
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The following image illustrates the structure of the Sweden's healthcare data exchange. Starting from the bottom, are source systems—local electronic health records (EHRs)—while the blue boxes above them represent regional databases.
At the center of the image is the The National Service Platform (NTjP). Data, such as laboratory results, vaccinations, and diagnoses, flows into the NTjP from regional databases through various APIs.
The blue box on the left of the image is an electronic directory containing data about healthcare organisations and personnel (including clinicians) across Sweden. At the top of the diagram are consumer platforms like 1177 and Journalen.
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Features
Note from the author: the bibliography for this section is from 2018. We weren’t able to find more up-to-date information, but if you have access to them, please contact us, and we were unable to locate more recent information.
Within the PAEHR system, patients can findaccess the following:
medical Medical notes from the EHRs (, from all health care professions healthcare professionals and all connected health care providers healthcare providers (both public and private) who have agreed to give access, both public and private), .
A list of prescribed medications, .
lab Laboratory results, .
warnings,
diagnosis,
maternity Warnings.
Diagnoses.
Maternity care records, .
referrals,
vaccinationsReferrals.
Vaccination records.
In some
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regions, users
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can also access
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a log function, allowing them to see
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who has
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viewed their record.
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Challenges and areas for improvement
Data Fragmentation: despite One significant challenge for Journalen is data fragmentation. Despite the existence of the Sweden’s national 1177 patient portal in Sweden, the country employs various Electronic Health Record (EHR) systems are still in use across the country. To address the challenge of consolidating EHR data for patients, Sweden has implemented a national Health Information Exchange (HIE) platform. However, however, challenges persist remain in achieving a comprehensive overview of health data. Variability in information accessibility among care providers, influenced by providers—due to differing policies and regulations, contributes to regulations—results in a fragmented patient view based , depending on the location, timing, and purpose of seeking treatment. This issue is closely related tied to the difficulty of in agreeing on a national regulatory framework for patients’ direct access to their health information.
Another challenge has been change resistance from healthcare professionals: healthcare professionals have expressed resistance to how introducing this system might change their work. Concerns include potential increases in workload, with fears that more time may be spent explaining EHR contents and addressing patient inquiries. Some professionals worry that EHRs could lead to conflicts, misunderstandings, and misinterpretations, causing unnecessary worry among patients. However, experience with e-services over time tends to alleviate these concerns, with healthcare professionals who actively use the system expressing fewer worries Resistance to change among healthcare professionals also poses challenges. Many professionals are concerned about how the system might impact their work. Key worries include an increase in workload, as more time may be required to explain EHR contents and address patient queries. Some professionals also fear that patient access to EHRs could lead to misunderstandings, misinterpretations, and conflicts, potentially causing unnecessary anxiety for patients. (Hägglund, 2017).
In a A 2022 survey on the usability of the Swedish Personal Health Record , the primary concerns raised werehighlighted several additional concerns:
Due to regional adaptations of the national regulatory framework for Patient-Accessible Electronic Health Record Records (PAEHR), different regions offer distinct features and present provide varying levels of health information to patients.
Several Some regions did not retroactively provide access to health information; the records only included include data from the date the region launched the portal.
Many regions imposed impose restrictions on patient data availability in access to specific clinical areasdata, such as mental health records. Some respondents perceived discrimination felt discriminated against due to the limited access to their mental health -related datainformation.
When a child turns 13, parents automatically lose access to their the child’s record. However, yet the child cannot access their own record until they turn 16, resulting . This results in a three-year gap with no access to the period where neither the parent nor the child can view the health record.
The platform lacks a messaging feature that could allow , preventing patients and healthcare professionals to communicate from communicating with each other remotely.
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Unfortunately, we couldn’t find any statistics about the use of the Swedish PHR. If you have access to this information or can put us in touch with someone who has, please contact us at book@patientsknowbestbook@phr4gov.comorg
Screenshots
Unfortunately, we couldn’t find any screenshots of the Swedish PHR. If you have access to this information or can put us in touch with someone who has, please contact us at book@patientsknowbestbook@phr4gov.comorg
Bibliography
Cijvat, C.D., Cornet, R. and Hägglund, M., 2021. Factors influencing development and implementation of patients' access to electronic health records—a comparative study of Sweden and the Netherlands. Frontiers in Public Health, 9, p.621210. (online). Available at: https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2021.621210/full (
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accessed 3 May 2023).
eHealth in Sweden, n.d. GNIUS. Edited by Délégation au numérique en santé (Ministerial delegation for Digital Health). Available at: https://gnius.esante.gouv.fr/en/international-digital-health-systems/ehealth-in-sweden (
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accessed 3 May 2023).
Hägglund, M., 2017. Electronic health records in Sweden—how can we go from transparency to collaboration? Thebmjopinion. (online) 23 June. Available at: https://blogs.bmj.com/bmj/2017/06/23/maria-hagglund-electronic-health-records-in-sweden-how-can-we-go-transparency-to-collaboration/ (
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accessed 2 August 2024).
Hägglund, M., 2020. Mobile access and adoption of the Swedish National Patient Portal. In: A. Värri et al., eds. Integrated Citizen Centered Digital Health and Social Care. The European Federation for Medical Informatics (EFMI) and IOS Press. Available at: https://www.diva-portal.org/smash/get/diva2:1509909/FULLTEXT01.pdf (
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accessed 3 May 2023)
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Hägglund, M. and Scandurra, I., 2022. Usability of the Swedish accessible electronic health record: qualitative survey study. JMIR Human Factors, 9(2), p.e37192. (online) Available at: https://humanfactors.jmir.org/2022/2/e37192 (
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accessed 3 May 2023).
International Trade Administration, U.S. Department of Commerce, 2023. Sweden - Country Commercial Guide. (online) Available at: https://www.trade.gov/country-commercial-guides/sweden-ehealth (
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accessed 3 May 2023).
Moll, J., Rexhepi, H., Cajander, Å., Grünloh, C., Huvila, I., Hägglund, M., Myreteg, G., Scandurra, I. and Åhlfeldt, R.M., 2018. Patients’ experiences of accessing their electronic health records: national patient survey in Sweden. Journal of Medical Internet Research, 20(11), p.e278. (online) Available at: https://www.jmir.org/2018/11/e278/ (
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Welcome to the Swedish eHealth Agency, n.d. eHälsomyndigheten. Available at: https://www.ehalsomyndigheten.se/languages/english/welcome-to-the-swedish-ehealth-agency/ (
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accessed 3 May 2023).