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Sweden aims to become the world leader in eHealth
Sweden’s government has set the country a target: to be the world leader in eHealth by 2025. Pontus Sörlin explains some of the current challenges for Swedish eHealth, and takes a detailed look at the Swedish government’s most recent report on eHealth, which inter alia recommends the setting up of a new national medical registry to be run by the Swedish eHealth Agency. The report, and particularly this suggestion, has drawn plenty of criticism however, as Pontus explains.
The article was first published by eHealth Law & Policy in April 2016.
The Swedish health care system and the outcomes of treatment are among the best in the world. But is Sweden also at the top when it comes to eHealth? Pontus Sörlin, at DeLorean Advokat, explains some of the current challenges for Swedish eHealth.
On March 13, 2016 the Swedish Health minister Gabriel Wikström announced that Sweden is going to become the world leader in eHealth by 2025. The government’s view is that the Swedish health care sector is lagging far behind other sectors that have adopted digital tools. The complexity of the Swedish health care sector might be a contributor.
Healthcare is managed by Swedens 290 self-governing municipalitites and its 21 county councils. Healthcare is also provided by about 10 000 private actors. There are also about 25 actors who run pharmacies.
Aside from legislation, the government use informal methods of governance, one example is to setup national e-health strategies. Another form of governance consist of agreements made between the government and SALAR (the Swedish Association of Local Authorities and Regions, in which all of Sweden’s municipalities, county councils and regions are members.).
Suggestions to increase information sharing
In the latest government report, The next phase of the work on e-health (1), published in March 2015, an extensive effort was made to uncover possible changes to acts or regulations to create a better, safer and more efficient use of information within the health care sector.
The report focused on the limited information sharing between the health and medical care providers on the one hand, and the social services on the other. The information systems were found to have serious flaws in terms of security and suitability for eHealth uses. A contributing factor to the lack of information sharing was that the actors in the public and private health sectors use a multitude of information systems. The report found that the number of systems operating within the Swedish health sector was immeasurable.
However, the report found that the main reason for the low level of information sharing was related to the professional actors’ insufficient knowledge regarding documentation, implementation and adherence to regulation and policy concerning information sharing.
The report thus concluded that the regulations for handling patient medication information were difficult to analyse for professionals. The report also concluded that the regulations were inconsistent in regulating the preconditions for the process of securely delivering medication. It was therefore suggested in the report that that a new source covering patients’ prescribed medication should be implemented – a new national medical registry.
The current medical registry collects all electronic prescriptions in Sweden. As a main rule, health professionals, although there are some exceptions (2), cannot access the registry directly. To simplify the process, the report suggested that a temporary solution would be implemented, whereby authorised professionals will be able to access the “old” registry directly. Also, the patients themselves would be allowed direct access to the registry.
Going forward, the report suggested that new legislation should be implemented to establish the new national medical registry. The new registry should be run by the Swedish eHealth Agency (SeHA), which also would assume the role of data controller for the registry.
Serious objections to proposed new legislation
The highly regarded Swedish Data Protection Agency (SDPA) raised serious objections over the report’s suggestions (3) and recommended that the proposed new legislation would be rejected.
The SDPA questioned the relevance in that a large number of users would be getting access to the medical registry, as the risks of unathorised use of patient data would become significantly higher.
The role of the SeHA as a data controller were also questioned, and the SDPA suggested that it would be sufficient for the SeHA to act merely as a data processor.
Regarding the suggestion that individual patients would get direct access to the registry, the SDPA objected that patients shouldn’t be given the right to share access to the medical registry to other persons within the health care sector. A patient might, for various reasons, feel pressured to share access to the information. There was also the concern that information from the registry could be made available to persons that represent commercial interests, for example insurance companies
Overall, the SDPA found the report to lack proper deliberations to protect personal integrity in order for the processing of data to be allowed under the Swedish constitution and the Data Protection Directive. The report was also found to lack proper analysis over alternative methods and less intrusive proposals. Additionally, the SDPA found that the deliberations that were made prior to the introduction of the current medical registry had not been made at all regarding the new medical registry.
eHealth services directed to the public
One aspect that was not covered in the report was eHealth services specifically directed to the public, “invånartjänster”. In all fairness, the reports directive did not cover this area. Nevertheless, this omittance sparked some criticism towards the report.
Sweden do have some rather successful services directed specifically to the public. One example is the phone service 1177.se, which is a phone service that offers free health care advice 24/7.
Some of the criticism regarding the lack of analysis in this area in the report focused on that large parts of future possibilities within eHealth were overlooked. As there are already significant challenges within the current system, those challenges only multiply when public eHealth services are considered. Therefore, SALAR considered the public eHealth services perspective to be necessary when considering changes in legislation in order to create a foundation for new constellations of actors working together and determining how to handle the responsibility for common infrastructure.
The Swedish IT & Telecom Industries (SITTI) also expressed surprise that the experiences from the suppliers of IT solutions weren’t covered at all in the report. SITTI suggested that the municipalities and county councils could clarify in what way suppliers could contribute and simplify the process of developing future eHealth services.
Much of the goverment’s focus and energy is currently being directed at governance and standardisation issues, as well as putting together an action plan going forward.
Overall, it seems like the omittance of the supplier side and public eHealth services from the report would almost certainly demand a follow-up directive where these issues could be addressed in a separate report.
Concerning the national health registry, the SDPA’s analysis will carry a great deal of weight when, or if, the proposed new legislation is being put through the legislative process. The next step in the legislative process is that a bill is put in front of Parliament.
The national medical registry is still considered high priority by the government. The government has announced that it is hoping to implement the national health registry in 2016 in spite of the current issues concerning personal data. As of today, however, such a proposal has not yet been finalised.
It seems rather unlikely that the issues concerning the medical registry will be sorted out prior to the report regarding the European Data Protection Regulation being presented and changed legislation put in place by Parliament. Given that the new regulation will strengthen the protection of personal data and that the SDPA criticised the current proposal for its lack of protection, it certainly seems like a major challenge to be able to implement the new medical registry at the present time.
Thus, there is a progression, albeit slow, towards handling the important issues within the eHealth sector in Sweden. Ten years to become a world leader in e-Health might seem like a long way off. Given the urgency and long list of matters that need to be dealt with during this time, one wonders, though, not if we have enough time, but if the time-frame is ambitious enough.
DeLorean Advokat, Stockholm
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- Nästa fas i e-hälsoarbetet (SOU 2015:32).
- 11 § lagen (1996:1156) om receptregister.
- Personuppgiftslag (1998:204).