Response to interpellation 2024/25:742 on the roadmap for national digital infrastructure
Translated from Swedish by AI; the translation may contain errors. The Swedish text is the original.
Summary AI, written in advance
The debate concerns the roadmap for national digital infrastructure within healthcare. KD argues that the government has already taken concrete measures 1 and that the infrastructure is crucial for patient safety 2. KD believes that the state must require everyone to connect to the system because voluntary cooperation has not worked 2, and that legislation is needed to ensure connection 3. KD argues that a uniform infrastructure is lacking and that it is necessary to build a road network with uniform code systems to ensure patient safety and efficiency 3 4. S argues that the government has not given a clear answer on when a roadmap should be established 5 and requests a roadmap for clarity 5 6. S argues that legislation is needed to get private providers to connect 6.
Written by AI in advance and may contain errors. The numbers lead to the speech a statement builds on; check against the text below.
Socialministern Jakob Forssmed (KD)
Mr. Speaker! Anna Vikström has asked me whether I intend to act so that a roadmap for national digital infrastructure is established in the near future, and if so, by whom. Anna Vikström has also asked me whether I intend to submit proposals for legislation to realize the implementation of a national digital infrastructure for health and medical care and EHDS primary use, and if so, within which domains.
The Government has already taken several concrete measures to prepare and implement a national digital infrastructure for health and medical care.
In January 2022, an investigator (S 2024:A) was commissioned to analyze and propose measures that enable a national digital infrastructure for the entire healthcare system with a focus on the legal prerequisites, as well as to analyze and produce proposals linked to the European Health Data Space, EHDS.
The investigation has so far submitted three partial reports. The first concerned cost calculations linked to EHDS, the second concerned the distribution of responsibility for tasks linked to secondary use according to EHDS – that is, how patient data may be used for purposes other than direct care, such as research and statistics – and the third concerned the legal conditions for national healthcare mediation. The Government has acted on all reports and will submit a proposition to the Riksdag regarding national healthcare mediation, as appears from the Government's list of propositions. The investigation is to submit an additional partial report in September this year and thereafter submit its final report on its assignment no later than April 1, 2026.
Furthermore, in June 2023, the Swedish Agency for Health Technology Assessment (Ehälsomyndigheten) was commissioned to prepare a proposal for the implementation of the national digital infrastructure. The assignment was finalized in April 2024. On June 20, 2024, the agency was also commissioned to further the proposals in the action plan for the implementation of a national digital infrastructure for health and medical care. In the execution of the assignment, the agency was to prioritize the infrastructure components and structures necessary for Sweden to comply with the preliminary agreement on EHDS regarding primary use. The assignment was finalized on February 28, 2025. In the agency's final report, there is a scheduled delivery plan where the agency reports which infrastructural components are to be put into operation and when.
Parallel to the assignment to move forward with the proposed roadmap, the government has tasked the Swedish Agency for Health and Care (Ehälsomyndigheten) with beginning the development of more necessary components for the infrastructure identified in the roadmap, for example a catalog of healthcare providers and social service providers, which among other things has enabled the healthcare search service. The agency shall also deploy a patient data index, PDI, and a national service address catalog, NTAK, by the turn of the year. These are components that form the basis for information to be able to follow patients regardless of healthcare provider.
In addition to these assignments, extensive work is also underway within the Government Offices to handle a number of reports concerning the digital infrastructure. Several of the reports are linked to one another, the national digital infrastructure, and the work on implementing acts at EU level linked to EHDS. The work with the reports therefore needs to be harmonized with the development of organizational structures, technical development, and the EU-wide work on the implementing acts linked to EHDS.
Three of the reports are handled in whole or in part through the EHDS Regulation. In addition to these products, eight reports concerning the national digital infrastructure are currently being prepared within the Government Offices.
Extensive work is therefore being carried out within the Government Offices and at the agencies to enable the implementation of a national digital infrastructure for health and medical care as well as the implementation of EHDS.
Anna Vikström (S)
Mr. Speaker! Thank you, Minister for Social Affairs, for the answer to my questions!
It may not be entirely easy for the listeners to understand what this is about. What, for example, is a national digital infrastructure? I would start by saying that the services that one as a patient can log into via 1177, for example seeing one's prescribed medications and parts of one's medical records, are based on the fact that there is a digital infrastructure throughout Sweden. It can, however, be discussed how national it is, since, above all, some private healthcare providers are not connected.
With a national digital infrastructure, the government intends the context of technical and organizational resources that support the exchange of information between and within different operations and sectors. My first question to the Minister concerned the proposals for a roadmap that the responsible authority submitted to the government. I asked if the Minister intends to act so that a roadmap for national digital infrastructure shall be established in the near future, but I do not think the Minister for Social Affairs has given a clear answer when it comes to decisions on the roadmap. What exists are two completed investigations. We believe that it is now starting to be time to be concrete and clear towards all involved actors, operations, and sectors, which are very many.
A national digital infrastructure consists of many different parts. Which parts need to be established first? As the Minister for Social Affairs has answered, there are proposals from the E-hälsomyndigheten, which has submitted two investigations and a roadmap to the government.
We have looked forward to information on how the roadmap and investigations are progressing here in the Riksdag, because for us, nothing has come so far that suggests when the national digital infrastructure will become a reality.
The fact is that besides the two large investigations that the Social Democratic government commissioned during the last term, and which are completed, the government has given very many new investigation assignments. They are so many that it really looks like a roadmap is needed clarifying in what order all of this should be realized, by whom, how, and when.
Another question that should be answered in a roadmap is the one regarding the relationship to the digital infrastructure that I mentioned initially, namely that which regions and municipalities operate via 1177 and Inera. It is addressed in the investigation, in a roadmap, how it could look.
We Social Democrats are fundamentally positive towards a national digital infrastructure. We would like to see a roadmap that can create clarity and predictability for the stakeholders involved, prioritize what is most important, and implement this step-by-step in the right order.
Should I interpret the Minister for Health and Social Affairs' answer as that the Public Health Agency (Ehälsomyndigheten) itself decides on the roadmap investigation and its content? It seems unlikely that the Public Health Agency can decide which other agencies shall be responsible for what in the national digital infrastructure.
To get clarity, I repeat my question: Does the Minister for Social Affairs intend to act so that a roadmap for a national digital infrastructure is to be decided or established in the near future, and if so, by whom?
Socialministern Jakob Forssmed (KD)
Mr. Speaker! First, I would like to thank Anna Vikström for asking the question. I would say that this is one of the most underrated things to establish better health and medical care in Sweden. If we get a national, digital infrastructure where the information follows the patient wherever they go and regardless of which healthcare provider it concerns, the information is available where it is needed for the staff but also for the patient.
It is fundamentally about patient safety. One should not have to repeat one's medical history everywhere one goes. Staff should not have to enter the same information two or sometimes three times. Furthermore, we know how important it is for the patient's security that someone knows one's situation when one appears at a healthcare clinic for various reasons.
When I stepped into the Ministry of Health and Social Affairs, I was surprised by how little of this we have in place. It is almost fascinating that one can follow a sock ordered from Italy. Wherever it is in Europe, you know where it is, when it arrives, and what status it has. This does not apply to patients.
That is why we do all this and produce investigation after investigation when we discover that we must have the legal and the practical in place. All these things need to be there. But then it becomes a bit messy. It is like when a number of tradespeople are to enter a house. Who should go in when and do what for the whole thing to work?
We have received a very good basis from the E-hälsomyndigheten regarding this, and now we naturally need to make decisions on when these building blocks should be in place. A number of things need to be done.
I am mindful of dialogue and have therefore created a council with representatives from the country's regions, for example from the IT side but also from the managements out in the regions. We also have a national coordinator who shall anchor the work and discuss with all involved so that we do not do anything unnecessarily or build things that already exist. There are huge problems with today's structure.
I am very pleased with Anna Vikström's commitment. The state needs to take a stand and state which standard shall apply and that everyone needs to join the system for it to work. This is something that has been missing previously. Until a couple of years ago, it was thought that this would be solved through voluntary cooperation, but that has not worked.
Furthermore, it is in many ways a major problem that the main part lies in a company, Inera, which we do not have insight into or control over. They do a good job in many respects, but for example, during the pandemic, the state could not use this infrastructure because there were private law and other reasons that made it impossible.
There is, therefore, much we need to change in order to achieve what we want, namely that healthcare information should be accessible regardless of whether the primary authority is municipal or regional, or whether it is private or public. Everyone needs to be connected and to be so in a way that makes it possible to exchange information with one another. Everything that is currently underway to make that possible is what I have presented in my response.
I will gladly return to the Riksdag with further clarity regarding when things should happen and in what order. However, I believe I have presented which processes are underway to meet the great commitment that we have taken upon ourselves. This is absolutely necessary for the patients and for the staff.
Anna Vikström (S)
Mr. Speaker! I thank the Minister for Social Affairs for the contribution.
I agree both regarding the utility and in the description of the problem, but I still have not received an answer to my question about when a roadmap will be available. We are requesting such a roadmap, as it would provide clarity and predictability for all involved actors so that they can prioritize what is most important in the correct order. It would also clarify the relationship to the existing digital infrastructure. Naturally, the European Health Data Space is included in this.
My second question concerned legislation to realize the implementation of a national digital infrastructure including EHDS and, if so, in which areas and domains it would apply. The Government has answered that a bill on a national healthcare mediation will be submitted, and it is good to know, but more is needed.
The government has itself written that there is a lack of a national digital infrastructure, which the Minister for Health and Social Affairs also says here, which covers all actors affected by the Health and Medical Services Act and the Dental Care Act. The consequence of this is that there are large information gaps for patients and healthcare providers who use current services within 1177, because not all healthcare providers are connected or are only connected to certain parts. It is not good at all.
In the investigation on a roadmap, it appears that legislation will be required to realize a national digital infrastructure. Examples mentioned in the investigation are that the public and private healthcare providers have a so-called duty of task and an obligation to connect to and use parts of the infrastructure.
Let us take national healthcare mediation as an example, something that the Minister for Social Affairs also mentioned. Will it appear in the upcoming legislation how it is to be done to get the private providers to join? It will be needed.
Let us look at the national pharmaceutical list and how it has progressed. The legislation originally came in 2018. Despite that, the national pharmaceutical list has been delayed several times. Now, another proposition regarding a delay has been submitted, which we will make a decision on this autumn. Despite the legislation, there have therefore been delays in achieving a connection for many times for reasonable reasons. One reason, for example, is that the majority of the regions are in the process of changing large healthcare information systems and other things.
How will it go with the connection of the occupied regions and the private healthcare providers to the rest of the national infrastructure? It is, after all, considerably more extensive. This worries me. What laws are needed for that, and when will they arrive? The Minister for Social Affairs answered that there are eight reports in the Government Offices, but I also asked within which domains and areas the national digital infrastructure will need new legislation. What is coming? I have not received an answer to that.
Socialministern Jakob Forssmed (KD)
Mr. Speaker! We are working very hard on this and will return with a long series of propositions to enable a digital infrastructure. One problem is that the services that we would like to have and want to build often presuppose that there is an infrastructure in place, but historically we in Sweden have not ensured that such an infrastructure is ready.
Of course, everyone needs to connect for this to work. Therefore, we must ensure that it happens with the help of the law. I think it is incredibly good that there is a consensus on this now, because it has not existed historically. Reliance has been placed on voluntary cooperation and that the regions would solve the matter themselves, but it has not turned out well.
Now we need to run fast here. We are working very hard on a national digital infrastructure that replaces and complements what already exists.
One can compare it with a road network. What we are doing now is building a road network that reaches everywhere, but we are also agreeing on which road signs should apply on the roads so that one can find their way in the system. None of this exists today. We have been building many vehicles – we have built the cars – but they have not found their way properly to the patients. Furthermore, the road signs have sometimes directed them in different directions when we have not agreed on what we are communicating.
This is a self-evident matter in other contexts. An electrical outlet looks the same regardless of which region in Sweden you are in. A cord looks the same, and they fit together. But that is not the case on the healthcare side; there, it looks different. That is clearly not good. One can describe a disease in ten different ways, and when the coding system does not look the same, it becomes incorrect. We must rectify this, and because we were so far behind, we now need to do all of this to a large extent simultaneously for it to work well.
There is a good basis from the E-hälsomyndigheten for a roadmap. It is a basic structure to work from. They have determined in which order the blocks should be built. We naturally have that as a guide to do it right and not end up in the wrong place.
We also, of course, have EHDS to adhere to. We must manage this not only in Sweden but also in Europe. If one visits an emergency department in Europe or is traveling and becomes ill, one should know that there is information available regarding one's own health status.
If we manage the task, we also have great opportunities to obtain better research and statistics that will enable patients to receive better treatment and that we can develop the new medicines and medical technology products that we need.
Anna Vikström (S)
Mr. Speaker! Thank you again, Minister for Social Affairs, for the contribution and the answer!
I wonder above all when these bills will arrive. Will all eight of them arrive in our [term]? They are not on any bill list now, at least as far as I can see.
I would like to respond a bit to this regarding the fact that nothing exists when it comes to road signs and so on – that symbolism. There is a digital infrastructure at Inera, which has been built up since 15–20 years ago. It is very well structured how these data should look in order to be presented there. The question is what can be reused, and this also needs to be included in the roadmap that I am talking about.
I also want to say that there have been disease classifications used globally for over a hundred years. So there are quite a few, but a lot of decisions absolutely need to be made in these matters. The big challenge is to realize the digital infrastructure so that all healthcare providers' information about the patients is included.
Just as the Minister for Social Affairs said, there have been initiatives, E-hälsa 2025, for example, which were based on voluntariness and cooperation. It is very good to cooperate, but the National Audit Office's evaluation shows that one has not been able to achieve such clear results when it comes to coordinated digitalization. It was a good attempt, but it was not enough.
We can observe that there is plenty of visions and investigations when it comes to the national digital infrastructure. But now it really needs to become workshop. By this, I mean that it is good that many assignments have been issued, but there was a real need for concretization in the form of a clear, decided roadmap and legislation where one can also see the areas of responsibility and which operators are to do the one thing and the other when it comes to this. We know that legislation was needed for the national pharmaceutical list, and it is needed now as well.
Socialministern Jakob Forssmed (KD)
Mr. Speaker! Thank you again, Anna Vikström, for raising a discussion about one of the most important things we are doing right now regarding healthcare to ensure that patients receive the right care and that one does not choose to take an extra test because it is so complicated to obtain the patient's information in the first place. This is a very pressing task that we are working very hard on. I am glad that we can have this basic consensus on this issue.
Of course, there have been disease classifications for as long as anyone can remember. But computers need to have it translated into ones and zeros, and in that case, these things can still be described in somewhat different ways. It needs to be translated into a code system that works, and then one needs to agree on how we translate things and matters when the same medical condition is described in perhaps seven different ways. How do we ensure that it is translated correctly into our code system so that those on the other side understand what the person in question is suffering from? We have not reached all the way there yet, and we need to do that. This is extremely important for us to have a good health and medical care, which is safe and patient-safe and which also protects the staff's time.
I also think it is interesting that those who are most eager to get this in place are the patient organizations. It concerns the chronically ill and those who seek care in different places. We have been able to read examples where a patient who has double cancer receives care one time in Stockholm and another time in Uppsala, because that is where they are best at cancer care. In that case, it can take three weeks for the information to move between the different regions – between Stockholm and Uppsala. That we have it that way in Sweden, well into the 2000s, is not sufficient, and that is what we intend to change.
Source: The Swedish Parliament. The speeches come from the open data of the Riksdag, translated into English by AI, which may contain errors.