Sweden recently updated its national eHealth vision, which now states that, by 2020, all residents aged 16 or over should have access to all health-related information documented in county-funded health and dental care. So, how are we doing so far? I have had full access to my electronic health record (EHR) online since 2012, when Uppsala became the first region in Sweden to make EHRs accessible to patients. I’ve continued to use the patient-accessible EHR (PAEHR) “Journalen” ever since. As a health informatics researcher and a member of the DOME research consortium, I also have a special interest in how the PAEHR is designed and used.
The responsibility for healthcare provision in Sweden is shared between the central government, county councils and municipalities, with the county councils the principal providers. Private care providers also operate throughout Sweden, but they are publicly funded and an integrated part of the national healthcare system. This decentralized organization of healthcare also means that each county council (or private care provider) has the choice over which EHR system it uses. This means that throughout Sweden, many different EHR systems are in use and interoperability between them has traditionally been low.
So how is it possible that as a Swedish citizen I can access all my EHR data in one place?
Two things enable this; a national patient portal and a national health information exchange platform. Although the county councils are autonomous and can prioritize which eHealth services to focus on, the decision was made at a national level that patients should only have one way to reach healthcare. A national patient portal, ‘1177.se’ is available for anyone seeking healthcare or health-related information in Sweden. The patient portal actually consists of three parts:
- 1177 on the phone – a telephone advice service
- 1177.se on the web – a public service website where citizens can access and search for information about illnesses, symptoms and treatments, as well as finding out about healthcare in their particular region
- 1177.se personal e-services – after authentication (using a nationally approved BankID), individuals gain access to personalized e-services. Citizens can add their primary care centers or hospital units and send secure messages to them. It is through this portal that Swedes can access their EHR.
Sweden has approximately 10 million inhabitants, 41% (about 4.1 million) of whom had created their own account to use personal e-services on the 1177.se portal by June 2017. Through this national patient portal citizens can reach the PAEHR and, in June 2017, the total number of unique users of this e-service had reached 1.3 million.
But although the 1177 patient portal is national, there are still several different EHR systems in use across Sweden. So how can the patient view all their EHR data in one e-service, so it looks as if it’s all from one EHR? Well, Sweden has chosen to implement a national Health Information Exchange (HIE) platform to facilitate the communication between different health information systems and eHealth services. The national HIE platform enables a single point of connectivity for client applications, making all Swedish EHRs appear as a national, virtual EHR. The PAEHR is one of the e-services using the national HIE platform, making the information gathered from possibly many EHR systems appear as one continuous record to the patient accessing it.
However, we have a long way to go. Despite the national HIE platform and the intention to provide patients with a complete overview of their health-related data, the view remains fragmented depending on where, when and why a patient seeks treatment, as there are important differences in how much information each care provider allows citizens access to. 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 resistance from healthcare professionals. Both within Sweden and internationally, healthcare professionals have raised concerns about how these changes might affect their workload. Some think that more of their time could be taken up explaining the contents of the EHR and dealing with increased questions from patients. There’s also a feeling that EHRs could make conflicts with patients, misunderstandings, and misinterpretations more likely, leading to those in care being unnecessarily worried more often. However, these professional concerns are often alleviated after the e-service has been in place for some time, and healthcare professionals who use the e-service themselves are less worried.
Despite the identified challenges, preliminary results of a national patient survey among PAEHR users in Sweden indicate that the overwhelming majority of patients who have accessed the PAEHR are positive about it. Almost 90% of respondents completely agreed and 8% partly agreed with the statement “Having access to ‘Journalen’ is good for me”.
With such a staggering vote of confidence from the actual users of the e-service, it does seem that Sweden is doing a lot right. However, we need to continue learning about how to best implement and use such solutions both within and outside of the country. In the recently started research project PACESS (patient-centered assessment of patients’ online access to electronic health records) Swedish academics have begun evaluating the current implementation and use of PAEHR through in-depth qualitative case studies in different regions. The goal is to achieve a better understanding of how roles, relationships, and organizational structures are affected. In addition, we will work together with patients and healthcare professionals to co-design future eHealth services based on the PAEHR to improve communication, collaboration, and co-creation of the EHR. We hope that this research will help move progress forward not only in Sweden but for all patients regardless of illness or country of residence.