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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.

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Journalen is the national Personal Health Record (PHR) in Sweden . This is defined in the country , defined as a Patient-Accessible Electronic Health Record (PAEHR), and . It can be accessed via the national health care healthcare portal, 1177.se. Journalen integrates Electronic Health Record (EHR) information from diverse various systems used across by Swedish healthcare organisations through a national health information exchange platform. The first region connected to the national this infrastructure in 2012, and all of the others followed, with the last one connected final region joining 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 comprises three key components: a telephone advice service (1177 on the phone), a web-based information platform (1177.se on the web), and personalized personalised eHealth services (1177.se personal eHealth services), which are accessible through authentication. The latter is the functions as a patient portal, with functionality features varying based depending on the region or healthcare provider (Hägglund, Blease & Scandurra, 2020).

The Swedish government, in 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).

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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.

(Moll et al., 2018)

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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

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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).

  • 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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  • accessed 3 May 2023).

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