Country’s healthcare system in a nutshell
The Swedish healthcare system is decentralised: the 21 regions are responsible for care provision and can decide whether to contract public or private providers. The system is public, covering all the people resident in Sweden, regardless of their nationality. 85% of its financing originates from regional taxes, complemented by direct federal government transfers.
It is structured into three administrative tiers:
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 municipalities handle care for the elderly, individuals with physical and mental disabilities, post-therapy support, and school health care.
The governmental entity known as the Swedish eHealth Agency is dedicated to digitalizing and enhancing the exchange of information among patients, the healthcare system, and pharmacies within the country.
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.
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.)
Public vs private
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The national PHR
History
The national PHR in Sweden is called Journalen. This is defined in the country as a Patient-Accessible Electronic Health Record (PAEHR), and can be accessed via the patient portal 1177.se. This service 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.
The 1177.se portal offers 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.
(Hägglund, Blease & Scandurra, 2020)
The Swedish government, in collaboration with the Swedish Association of Local Authorities and Regions (SALAR), has formulated a vision for the national e-Health strategy. By 2025, the goal is to establish Sweden as a global leader in leveraging digitization and eHealth for improved health and welfare, fostering independence.
eHealth is deeply integrated into Sweden's healthcare sector, 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 of digital health services, with digital consultations doubling in 2020, representing 11 percent of total 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).
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.
Within PAEHR, patients can find:
medical notes from the EHRs (from all health care professions and all connected health care providers who have agreed to give access, both public and private),
list of prescribed medications,
lab results,
warnings,
diagnosis,
maternity care records,
referrals,
vaccinations
In some of the regions, users have access to a log function, to see whoever has accessed their record.
Challenges and areas for improvement
Data Fragmentation: despite the existence of the national 1177 patient portal in Sweden, the country employs various Electronic Health Record (EHR) systems. To address the challenge of consolidating EHR data for patients, Sweden has implemented a national Health Information Exchange (HIE) platform, however, challenges persist in achieving a comprehensive overview of health data. Variability in information accessibility among care providers, influenced by differing policies and regulations, contributes to a fragmented patient view based on the location, timing, and purpose of seeking treatment. This is closely related to the difficulty of 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.
In a 2022 survey on the usability of the Swedish Personal Health Record, the primary concerns raised were:
Due to regional adaptations of the national regulatory framework for Patient Accessible Electronic Health Record (PAEHR), different regions offer distinct features and present varying health information to patients.
Several regions did not retroactively provide information; the records only included data from the date the region launched the portal.
Many regions imposed restrictions on patient data availability in specific clinical areas, such as mental health. Some respondents perceived discrimination due to the limited access to their mental health-related data.
When a child turns 13, parents automatically lose access to their record. However, the child cannot access their record until they turn 16, resulting in a three-year gap with no access to the record.
The platform lacks a messaging feature that could allow patients and professionals to communicate with each other remotely.
(Hägglund and Scandurra, 2022)
Published outcomes - statistics
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 through the form below:
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@patientsknowbest.com
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 (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 (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/ (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 (Accessed 3 May 2023). doi:10.3233/SHTI200699.
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 (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 (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/ (Accessed 3 May 2023).
Welcome to the Swedish eHealth Agency, n.d. eHälsomyndigheten. Available at: https://www.ehalsomyndigheten.se/languages/english/welcome-to-the-swedish-ehealth-agency/ (Accessed 3 May 2023).
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