Q: Could you please give a short overview to the Estonian public of the Swedish healthcare system and the e-health system?

A: Yes. I’m not sure what to say about the Swedish healthcare system, but healthcare in Sweden is managed mainly by the regions. We have 21 different regions in Sweden which are quite autonomous, so they make their own decisions about how to run their healthcare system. There are also national guidelines and policies, but the regions can decide for themselves what they do. Healthcare is tax-funded and as a citizen, you pay a small fee for visits in primary and secondary care, but there is a cap so you will never have to pay more than around 2,000 Swedish krona per year for healthcare visits. To be precise, the amount is 1,200 krona for outpatient visits (primary + secondary care) and 2,400 krona for prescription medications per year.

Healthcare is divided into primary and secondary care. We also have municipalities that are responsible for caring for the elderly. So, home care of the elderly, nursing homes, etc. are the responsibility of the municipalities, of which we have about 290 in Sweden. So, there are two or three layers, if you count the municipalities and the regions. Within the regions, you have primary and secondary care, and of course, we have private healthcare providers as well. The private healthcare providers are more prominent in some regions, in others less so. In the big urban regions, you will probably have more private healthcare providers, but they are mostly also tax-funded, so they will have an agreement with the region and they will be reimbursed the same way as public healthcare providers – the region-run healthcare centres. So, they will have a similar agreement with the region. As a citizen, you don’t really have to keep track of whether you’re visiting a private or public healthcare provider.

When it comes to e-health and digital health, all of the regions and municipalities collaborate through an organisation called the Swedish Association of Local Authorities and Regions (SALAR). They own a company called Inera AB, which is responsible for providing national e-health services. They run the Swedish national patient portal, which is called 1177.se. All of the services on this platform are the responsibility of Inera, but they get their action plan and work orders from SALAR, so from the municipalities and regions together. So, it’s not quite a private company – it is owned by the regions. Through this national patient portal, you can access many national e-health services as a citizen, book appointments, send secure messages, see your medications, and access your medical records online. All regions are connected to this platform and so are most private healthcare providers, at least the larger private companies. However, there are some smaller ones that are not, and as a citizen or a patient, you can’t use the national services in collaboration with those healthcare providers.

The main aim is that there should be one entry point as a citizen to reach healthcare. That should be the national patient portal.

Q: Where does the Journalen, which is now ten years old, come into play? Is it your regional patient portal?

It started as a very regional project, so back then, having access to your medical records through Journalen was only available to citizens in the Uppsala region and it was directly connected to the electronic health record system that was used in the region – all of the regions have different electronic health record systems. As the regions are so autonomous, they can choose which IT systems they will use in healthcare. The electronic health record system is, of course, one of the core systems, and beyond that, the regions decide themselves which system they want to buy and use, which means that we have different electronic health record systems throughout Sweden. I think we’re down to maybe three or four major ones now, but they’re still different and installed separately in the regions.

When Journalen was first launched ten years ago, when patients were first given access to their records in the Uppsala region, it was directly connected to the electronic health record system in the Uppsala region, so it was only available to citizens in Uppsala, but since then, it has been moved to the national patient portal, 1177.se. When you log in to the national patient portal, one of the e-health services that you have access to there is Journalen. It’s accessible to everyone throughout Sweden and now, all regions are also connected: they have connected their electronic health record systems through the infrastructure that is in place. This means that when you log in, you don’t have to choose. Well, you can choose which region you want to view in general, but when you get to Journalen, all of your data throughout Sweden will be available there, regardless of which region you received healthcare in. So, it’s just one place where you can access your information, and it looks like it’s one record, even though in reality, it’s likely information from many different electronic health record systems.

Q: So, I guess the bigger the country, the more complicated the system?

A: I think so, yes. And looking at Estonia, I know that when you launched the national patient portal, Digilugu, digitalisation maybe hadn’t come as far in Estonia at that point in time. What we were very impressed with in Sweden was that Estonia said, ‘Let’s sit down and do this right from the beginning.’ And you looked over legislation, infrastructure, everything, and you built it more or less from scratch. This is one of the reasons why we really wanted to include Estonia in the NORDeHEALTH research project: we knew that the Estonian national patient portal had a different starting point than, for example, the Swedish one. In Sweden, we had so many legacy systems, we had to consider the autonomy of the regions, and everyone wanted to make their own decisions. It was more about connecting these different parts that were already there. We already had legislation in place that didn’t allow patients to have online access to their records, for example. It took quite a few years to change that legislation. We’re looking at similar changes to legislation now when it comes to, for example, proxy access, which is also not allowed under the current legislation. We see a big need for proxy access when it comes to many vulnerable patient groups that need help with using digital tools, which are becoming more and more important in healthcare. This is why I think the international research collaboration as part of the NORDeHEALTH project is so important. We can actually compare our solutions, see what works well, and learn from each other. Proxy access is one area where Sweden can learn a lot from the experiences of other countries.

I think that yes, it does make it a bit more complex when you have more autonomous regions. Some people are still saying we should just have one electronic health record system for everyone in Sweden as well, but I think that it was never really feasible to do that, to say, ‘Let’s scrap everything that we already have and just make one system for everyone.’ So, this more interoperable platform that integrates different systems has been one of the success factors for the Swedish context; we needed to have something like that and I think it’s also quite unique as a solution. I’m quite proud that the Swedish stakeholders managed to get this platform up and running.

Q: I believe in Estonia we have actually had a slightly similar discussion, but at the hospital level – we are a very small country, but every hospital uses their own EHR system. There has been some discussions that maybe hospital should implement the same system. On the other hand, it is a very complex issue and, of course, competition is also something that helps to make better developments, improvements, and so on.

A: It’s funny because I know that when I was in the US, for example, they said, ‘Well, you can do this because you’re in Sweden, you’re such a small country and you have so few citizens.’ I was a bit frustrated with that way of thinking – the problems are the same, it’s just a different scale. I think it’s the same with Sweden saying, ‘You could do that in Estonia because you’re a much smaller country than us.’ I mean, the problems are the same. So, I think that we just different scales for it.

Q: I agree. In your view, what are the main similarities and differences between patient portals such as the Swedish one and the Estonian one? Are there any functionalities that our Digilugu has that make you think, ‘Okay that’s a pretty good function and we should also have it’, or vice versa?

A: I think that it’s quite interesting that we use very different ways of handling the access of teenagers and parents. In the NORDeHEALTH project, one of our PhD candidates, Josefin Hagström, made the comparison of how parents and teenagers have access to health records in Sweden, Norway, Finland, and Estonia. I know that in Estonia, parents have access to the children’s records for longer, but children also have access to their own records earlier. This is something that we’ve been to struggle with a bit in Sweden, trying to figure out how to solve it.

In Sweden today, as a parent or a legal guardian, you have access to your children’s records until they turn 13. But the children themselves only gain access at 16, so we have a three-year gap which no one is happy about. I know that there is a revised guideline coming out soon where this will change, but that’s been one of the areas where we’ve been a little jealous of Estonia.

There is another difference related to record access. In Sweden, you have access to what the doctor or nurse wrote in the original record almost as soon as it has been entered into the record. In Estonia, I believe it’s more of a summary record that you as a patient can access through the national patient portal. I personally feel that the Swedish solution is better here, but that’s a decision to be made in each country, of course. I think that most patients, or at least the patients who use the online record, want to have access as soon as possible to as much information as possible. That it might also be something that is driving more widespread use. When you know that the information will be there, you have the tendency to log in and look for it. But if it’s more of a summary and you’re not quite sure when it will be uploaded, then maybe it doesn’t encourage you to log in as frequently.

We also had a function in Sweden which we removed, which was that patients could add comments to their record. The function did not work well, it was not designed well, and it was not really integrated with the evolving platform. It’s been 10 years since the first version of Journalen was launched, and this function wasn’t really working with the current platform, so it was shut down. But I think that a more interactive version of accessing records is something that we will see more of in the future. I don’t think any country currently really has that in a good way.

Q: It would be more like a two-way street, right?

A: I think so, yes. However, there are a lot of interesting challenges in this, which we are currently exploring in the NORDeHEALTH project. I don’t think it should be rushed – it should be explored carefully so that we create a win-win situation for patients and clinicians without increasing the workload for either. We have such opportunities today thanks to smart solutions with AI and automated functions that could really help us take advantage of all this data that we are constantly generating about our health. I think that this is something that will happen sooner or later.

In the US, they have a very interesting project that looks at patients as sort of a safety mechanism when it comes to the quality of the records – looking at how patients can point out errors or correct information that has been entered into the record incorrectly. I think that we could and should look at that in the Nordic countries a bit more as well, because I think it’s a very interesting opportunity. I know that many have been quite anxious about what will happen if patients find errors in their record – what if they lose trust in us? However, at least in the research that we have done, most patients are quite aware that clinicians are human and errors happen. They’re quite forgiving when it comes to finding errors, but, of course, they want to have them corrected. I think that giving or facilitating that opportunity for patients to actually improve the quality of the record is important, and I think it is a bit of a missed opportunity today.

Q: For us in Estonia, it seems that the Swedish people have a lot more trust in scientists and researchers. Maybe it’s a slightly philosophical question, but why do you think it is that in Sweden, scientists and universities have such a good reputation?

A: That’s a tricky question. In Sweden, we have traditionally been quite trustful of authorities. On the other hand, we have had several studies where people are asked about participating in research. How do they view this matter, for example? I think that the Swedish citizens want to contribute to research, they feel like it’s an opportunity to do their part and participate in our society by sharing data or joining studies. We are seeing a shift, though – in Sweden, there is also a decreasing interest in participating. We sometimes talk about people’s willingness to help others – altruism – and that is a little bit lower these days. That may be because Sweden has been quite stable in terms of economy and governance. We haven’t been involved in many wars, we’ve had this welfare state for a long time, there has been a very strong feeling that we are taken care of.

We have had this social democratic leadership in Sweden for a very long time and people have felt that they’ve been very well taken care of. I think that it has also increased the trust in both the government and in higher education – it has been free, so a lot of people have continued to study at university. So, maybe that has increased the trust, but I don’t have a very good answer.

It is built into our political system that certain decisions are not made by the politicians, but rather by civil servants. So, in Sweden, when it came to the strategy for handling COVID-19, for example, that responsibility was not with the politicians. The responsibility was with the Public Health Agency, in which civil servants work. These people are researchers and highly educated clinicians, but they’re not politicians. So, when these kinds of things happen in Sweden, these are not political decisions to make. These are decisions to be made by these agencies, these authorities within Sweden. But, of course, when it comes to the final decisions, the politicians could say, ‘We’ll change the decision anyway. We’ll go this way, even though the recommendation from The Public Health Authority is to go the other way.’ But there has been a very strong tradition in Sweden to listen to these expert authorities rather than the politicians. I think some other researcher will have to answer this, because I don’t really know. (laughing) I just know that this is something that was discussed a lot during the pandemic – that we in Sweden have this tradition that when there is a public health crisis, we let The Public Health Agency suggest the plan and the politicians will adhere to this plan instead of trying to make their own decisions based on public opinion.

Q: So, the cooperation between experts and scientists on the one hand and politicians, the government, and the ministries on the other is there? They listen to experts and scientists?

A: It’s expected, yes.

Q: That’s something that we in Estonia still need to improve or develop and maybe learn from you.

A: I think we have room for improvement there, as well, but we try. We try to get involved and collaborate as much as we can, but especially when it comes to the digital health arena, where things need to happen quite quickly sometimes and there’s a lot of pressure from different stakeholders on which way to go. So, it might be a little bit more challenging to find a consensus. We have somewhat different paces, timeframes – when we do research, it takes us two years to have the results published, but digital health developers want results now and they want things to happen much more quickly.

Q: That’s also our experience – in Estonia, we have this parallel national patient portal project going on. It seems that we are moving sort of in parallel right now. In an ideal world, scientists and researchers create their guidelines and carry out their study and then the new projects happen, but right now, we see that the national projects have their timeframe and they can’t wait until we have our results. I guess it’s a strength of science that things take time – when you rush into things they might be a bit half-cooked.

A: And hopefully, we can establish shorter feedback loops where we can contribute results even before we are entirely ready with our publications. You can deliver some results as you go along. We talk about action research or participatory action research, when we try to really be part of an organisation and engage with the stakeholders directly so that the learning process also happens within the organisation. But those kind of research projects are challenging, expensive, and sometimes difficult to publish, so there are a lot of aspects to think about.

NORDeHEALTH - what project is it? NORDeHEALTH is a research project of Tallinn University of Technology together with Nordic countries concentrating on electronic health records and national patient portals, challenges, user satisfaction and expectations in order to support the development of new digital health services.