Readiness for the EHDS in the Northern Nordics - Project Reflections

[MUSIC] Welcome back to the Information Systems ISDIGIS podcast. I'm your host, Cassandra Grunström, an associate professor at the Norwegian University of Science and Technology in Trondheim, Norway. And I have a bit of a special episode today where we will have a panel discussion to talk to experts from Norway, Sweden, and Finland, working on understanding the readiness for the European Health Data Space in the Northern Nordics. This is part of a very aptly named project, the Northern Health Data Spaces, and the project is funded by Interreg Aurora. So let's get to know our panelists a little better. So let's go for a round of introductions starting with Minna, please. Thank you, Cassandra. So my name is Minna Isomurso. I'm a professor of Digital Health here at the University of Oulu. I'm the coordinator of this great project, and I'm helped with Brabat here also at the University of Oulu. So I passed the project. Thank you very much to both Minna and Cassandra. So as Minna briefly mentioned, my name is Brabat, full name Brabat, I'm a post-properate researcher at the University of Oulu. And yes, I'm the project manager on Nordic Health Data Spaces. And before this, my research interests have been primarily more towards software engineering, software measurement metrics, and software quality. That's what was my focus during my local studies, now I'm going to Brown Child into Digital Health. And Nordic Health Data Spaces is my first major adventure. Great, and let's keep making our way west. So from Sweden, we have Lorsh. Hi, and thank you, Cassandra, for having me on this podcast. So my name is Lars Erbrandt. I'm an associate professor at the Department of Informatics at Umeå University in Sweden. And we have been focusing on the value creation aspect in this project. And this kind of goes together with what I do research on in terms of digitalisation, digital infrastructures and value creation. Great, and now let's make our last stop here in Norway. So Lina, if you could introduce yourself. Hello, I'm Lina Elinsta. I work at the Norwegian Centre for E-HELT Research. I'm a senior advisor and a PhD student, and I'm a political scientist. And I work on topics related to the governance models and the HDS. Great, and last but certainly not least, Cassandra. Yes, that's a great pleasure to be on this podcast. Thank you for having me. I'm Cassandra Etzbola-Tikso, a senior researcher at the Norwegian Centre for E-HELT Research. I have a very broad research interest in E-HELT's privacy preserving techniques, particularly for secondary use of data. I'm leading the project on behalf of NSE. Great, well, welcome to all of our panelists. I'm very happy to have you here on this podcast in a very different format than what is traditionally presented to the world. But I think we will have an exciting episode where we'll examine the kind of top-down perspectives of the European health data space, including regulation and governance of health data, and we'll also dive a little bit more into discussing technical aspects for realizing the vision of primary and secondary health data use. And then, as Lars said, he and Sweden are looking more at these value creation perspectives. So talking about how value can be created among stakeholders, and then a summary wrap-up of what actionable outcomes this really informs, and how this might be of interest to you as listeners, in terms of what might be actionable for you to learn more about the European health data space. So let's dive right into this concept of the European health data space, and for those who maybe haven't heard anything about it before. Mina, I'd like to ask you if you could briefly explain what the European health data space is and what it aims to achieve. Sure, thank you. So European health data space is kind of a vision or kind of look into the future of what could be how we use digital health data in Europe. So it's kind of aimed to establish a common framework on how European countries and companies and hospitals and public sector and individuals in European countries handle and use health data. So it's not something that really exists yet. It's something that we are now building policies and building practices and creating these frameworks. So this project of ours, Nordic Health Data Spaces, looks at what would need to be done here in the Nordics to kind of move towards that vision. And how ready we are for this change and what we would want from this change. So from different actors viewpoints, the European health data space would mean that we as European citizens, we would have access to our health data in different parts of Europe. So if I have finished citizen would for example move to Italy, I would still have access and control of my health data. So I would have like, like I could I would have better possibilities to get care in different parts of Europe. And that would then put my mobility inside Europe and would provide European health care sector better resources and capacities to provide care for all European European people. So that that from the individual point of view. But then we here we are researchers. So European health data space also provides something for researchers. So it provides a means for researchers to pool European health data into resources that we can then use in research. So for example, that we can look at all health data available in Europe or no specific condition or from the specific specific target group. And then do research on that. So it gives the research institutes and research making organizations better possibilities to do research driven data driven research. Then for companies who provide or who build devices or solutions digital devices for health care, European health data space provides a framework that they only need to develop one solution that can then be targeted for all European market. Because right now because the market the data market is very fragmented, you need to basically have a separate solution for each country and not even country almost like for each health care provider because the data structures and the data access is so different. But if we have this common framework, then a product solution service provider can just provide one and then it should optimally work work the same all over all all over Europe. So these are kind of kind of aims and visions we have we what we want to achieve with with that European health data space. That is definitely a very ambitious sort of framework, but you know somewhere where we want to be in the future of European health and I heartedly agree with your example of going to Italy this time of year, especially so mobile mobile health data is sort of the the undercurrent of all this. But of course we can talk about the European health data space sort of what it is and what it aims to achieve without also talking to our resident political scientist. So Lena, do you have any additions to a minute's description from maybe the more the top-down policy perspective? Yes, thank you, Kostandra, for asking. From my perspective, the European health data space is regulation which strengthens other regulations in the European regulatory strategies to realize the European health union to realize the European internal market which functions for commercialization and growth particularly in healthcare innovations, but also in relation to strengthening the use of European-produced technologies in European healthcare which will give a better healthcare service for to improve the healthcare services for the services in Europe. But from my other perspective, the perspective of governance models, I see that the European health data space is also in connection to the other socatecte diagnostic regulation called the AI Act is defining new actors which should be included in both the European, the governance model on the European level but also governance models on the national levels and the regional levels. And with governance models, I mean policy arenas where different stakeholders and government officials on the different levels are meeting and sort of negotiate the policies and how to put them into practice in the areas which they are responsible for, for instance, in North America. Norway, we have a European, we have an E Health Governance Model, which is governing the implementation of the European of the EHRs in Norway. But I see this model when we are including now or implementing these regulations, in particular here, which we're talking about European health data space, they need to also adapt and align that governance models to these new actors. And some of the new actors I see are coming up, maybe they're not new, but they get to another status that this actor is on the market surveillance scene, because we all know that AI solutions have to be monitored after they're being implemented in our healthcare systems. And we're just starting with implementing services, but we include AI in the clinics, but we need systems and platforms, dashboards, etc., in the future where we can go in and monitor the use of them. And to do that in democracies, which we live in, which where we have high trust, in our healthcare services, we need solutions and we need policies and decisions where all stakeholders are included in order for them to become legitimate solutions and legitimate policies for all of us who are living here and paying our taxes. Yes, another great answer. Well, thank you both for kind of helping shape the flavor of what the podcast will be focusing on around this European health data space. But I want to maybe also shift to talk about the project itself, where we have been working within the Northern Nordic context to look at the European health data space, or what we also refer to as the Aurora region, which is sort of anywhere north, laterally from Trondheim sort of upwards to the Northern Nordics. So, Mina and Prabhat, as you are like the responsible parties for running this project, maybe you could tell us a little bit more about what the project entails and sort of the themes around the project. I can maybe start with like an overview of why we thought this project would be needed and why we think it's important and Prabhat think and tell about the implementation how we structure the project and what we actually aim to achieve. So, when we were writing this research plan and proposing this project for funding for Interreg Aurora, we were thinking that the north of the Nordic countries are a bit special area in regards health data sharing. For many reasons, one of them being that we have quite long tradition of sharing health data and collaborating around health data here in Nordic countries. We are one of the most digitalized countries in Europe. We have long history of having digital health records and health records in general. So, we have these body of resources and data available and we have already through Nordic collaborations. We have established some data sharing practices that have been used for quite a long time already. So, we have this history of having this capacity of sharing and using seeing the value in data sharing. Then on the other hand, we are kind of geographically and the living conditions here in Nordic might be a little bit different from other parts of Europe because it's quite sparsely populated. We have some special user groups here in the north like some big, some people and there is this special history of how people live here in the north. We might even have some special health conditions that not that common in other parts of the Europe. So, kind of healthcare delivery wise, we are special. So, that's why we thought kind of this combination of the history of having this tradition of health data sharing and then these special conditions to actually deliver health care in this area are special. So, we thought that this would be fruitful and interesting and impactful context to study health data sharing and that's how the project emerged. And I can now pass the broads or to tell a little bit how we are implementing and what we are actually doing in the project. Yes, my pleasure. So, this entire project can be seen as a gap, like big gap analysis and how to bridge that gap. So, ESCS is obviously coming and there are certain requirements put forth in the regulation that ensures seamless adoption in the countries that it's interested in ESCS. So, in this project, we are trying to study in the Aurora region how well prepared we are and we're trying to study that preparedness from different angles. So, one foremost is the policy work is the policy angle. So, do we have the policy that are compatible with what EHS requires of us? Is it in is aligning or is it in contradiction to what EHS would ideally have? Would ideally require on the policy front? So, where we are in terms of policies, then next is the technical infrastructure because EHS regulation is not just policy, it also enforces to certainly the kind of infrastructure, the technical infrastructure that's needed to make the different operations under EHS possible. So, where do we stand there in terms of the technical infrastructure? What do we have now and what's needed and how do we bridge that gap? Then again, the skills and competencies of the workforce that will be involved in helping adopt and then contribute to EHS. So, where do we stand there? How skilled and how competent are our workforce and what's needed to ensure that they will be able to leverage and extract maximum potential from EHS. And how do we bring all of that together to propose what kind of value can be created within this context? So, these are the different pieces that we are trying to study. So, where do we stand now? Where should we ideally be for us to be able to confidently and confidently start using EHS and how to bridge that gap? So, that's when we come in and that's what we're trying to propose through this project. Yes, very good summary. And I think that also speaks a lot to, like you said, this big gap, like we want to understand more about how ready this region is for such a top-down pressure where things already sort of organically are happening. So, the sort of uniqueness of it and what makes it interesting to study itself. So, let's dive into what's happening in the project. So, I'd like to first focus on the top-down challenges that we're seeing in terms of the readiness for the region. And of course, the European Health Data Space involves navigating very complex policy landscapes across different EU member states and even though the Nordic share very common societal values and high digitalization indexes, there's still differences between each of the states in terms of how they've even interpreted the GDPR, for example, or how healthcare delivery is provided. So, maybe Lina, do you have some thoughts on what the biggest hurdles are for harmonizing these policies for effective health data sharing? I think one of the reasons why we wanted to create this project and to implement the project was because you wanted to make all the different actors more aware of what's coming and also discuss with them how they see their roles and inclusions in the governance of the implementation of the HDS. So, I think maybe you could say if you take step back out, maybe we could say that one challenge here is the maturity that the understanding of what this kind of dysregulation would entail in practice both on the on the macro level, the policy level, but also on the more micro level all the way up and down. And one of the main findings for us is that the different stakeholders, at least those we have conducted interviews with in Norway, they say that they need more information from the government, I mean, talk down for us, for them to understand what this would entail in practice and how they should focus and collaborate across organizational borders and also on different governance levels. And then we have not yet started analyzing and comparing the Norwegian Swedish and Finnish data on this topic, but I may be, I'm not sure, maybe this is something which we could discuss which large and MINA has some and throughout has some ideas, some some findings on maybe because the other two countries you Finland and Sweden are you members. So, you're it's more open, there are more there's a more there's more openness perhaps about discussions and how to implement the regulations in these countries because in Norway and we are also a region which is far from the center. So there are more people in the north of Norway who are not very positive to the EU and the EU regulation. EU membership for Norway. So it's sort of, this will have some influence on there. It might have some influence on that, how it's all talked about. Because in Norway, it's now we're having an election in the autumn. Just bringing this up and discussing these things might, I mean, we have also talked to politicians, interviewed politicians here. Might stir up some things, which is not something which politicians actually want because it could change the agenda. Maybe it's different in Sweden and Finland. But for you, you're part of the EU system. You don't have to do a new referendum to become a member. So there are some vulnerabilities here. Some something which is different, which might be a challenge, also a challenge in understanding how to implement stuff. For sure. And it sort of is the antithesis to what Mino was describing that makes the project interesting in many ways is what is good for our project is also what is creating these sort of uncertainty. So many of these key policy decisions will of course also significantly impact technical feasibility and complexity of building infrastructure necessary to support or facilitate the European health data space such as the my health at EU, which is the sort of portable citizen data health data that moves around. But maybe Kasai, do you have some insights that you could share about these challenges for technical infrastructure? Yes, sure. I think the background for the regulation itself is kind of the fragmented situation that we have in Europe. So both in terms of the regulatory fragmentation, how the different European regulations are implemented, but also like national specific regulations are very fragmented. But also the European countries, they have different technical and technical infrastructure and digital skills maturity level. So this is one of the things the regulation is trying to harmonize. So for example, here in Norway or in general in the Nordic, there is good maturity of technical infrastructure. But also the digital skills, if we take more to others than ours, because of the challenge, Mina has mentioned how the region is kind of situated in terms of environment also, how the population is fragmented, look at the kind of settlement, very fragmented settlement. So to support this challenge, the countries have invested a lot in terms of technical infrastructure. For example, in Norway, we have had the National Center for Telemedicine and Integrated Care for several years trying to implement different technological solutions to support the challenge. So there has been a lot of work invested on the technical advancement. So the question would be when we would try to get when the European has data space regulation is implemented across Europe, we are starting with this fragmentation. So how can we kind of bring those, in this return to those advanced technical infrastructures and then you want to the same speed accounting, this difference is also important, but also how do we make sure this advanced infrastructures are compatible with the requirements of the European has data space regulation. And another challenge is, for example, one of the requirements from the regulation, which is also key for the success is quality of data being collected by healthcare providers. And this is kind of an input for both primary care and secondary care. So to make that happen, that means healthcare providers need to work on increasing the quality of the data they are collecting, which may increase or put additional burden to the healthcare providers, which they are already fully occupied. So how can we support them, elevating some of the burdens in the data collection? It can be using different technological solutions, maybe using AI or other digital technologies to support them. So this requires a political decision. And then in general, when we look at the second use of data, the as data holders, including healthcare providers, need to do a lot of things to comply with the requirement of the regulation. So it could be, for example, standardizing, the standardized description of the data they are collecting and also monitoring the accuracy, which is additional job. And which requires new technical skills. They probably don't have at the moment. Also, maybe additional tools, they would need to comply with these requirements. So the question would be, how do the different member states support these institutions towards complying with the requirement in terms of competence building or in terms of making available more tools? And even when necessary, outsourcing some of the work that they need to do with additional mechanisms. But in general, in terms of harmonizing these differences, they need to be changes from member states sides to kind of make themselves harmonized. And this change needs to also maintain the national unique context in each of the countries which requires a lot of discretion and negotiation. - Yeah, I think a lot of what you say echoes a lot of familiar feelings for when the GDPR was coming into force. So do you have any, maybe like, do you have any quick thoughts about how the European Health Data Space is maybe a little bit different from the GDPR in terms of implementation? - I think the main difference is at least in the European Health Data Space, it contains both governance structure but also infrastructure. Whereas in the GDPR, it was more of the regulatory side. But some of the, for example, individual slides and etcetera, stated in the GDPR was not implemented because there was no infrastructure to realize that those rights, for example, data portability, individuals have that's right. But the regulation did not require the care provider to have that infrastructure in place. So it was not difficult to realize that rights, whereas in the European Health Data Space, there is an infrastructure to make that happen, which makes it easy to implement. But also some of the challenges in the GDPR was that a lot of open possibilities for members to specify their own national specific requirements. And because of these options, members, they are somewhat divided into different ways of doing or practicing the regulation. But in the European Health Data Space, I think that's relatively, even though there are still member states, there are freedom for members to decide how to realize or even to kind of specify some options. But I think it's more specified and also a lot of projects are happening at the moment trying to harmonize the requirement from member states into EU level decisions. I agree, and I think that the GDPR has sort of an interesting example of us being funneled or pushed into an hourglass and being narrowed in order to adopt this regulation into our local context. But then the European Health Data Space is sort of flipping that again and broadening the connections and trying to make it more about realizing a European Health Union like a broader vision. So it is an interesting take on how then can certain ambiguities or uncertainties then turn to create value. So I'd maybe turn to Lars here for this question about what sort of expected challenges might come up when it comes to creating value related to the European Health Data Space. Do you have any thoughts on what these challenges might be? - Yes, thank you. Let me start by just saying that I think this project, one of the strengths has been what Lina described as the connection between the micro and the micro levels. I think we have kind of that way of looking at different levels and how they relate has allowed us to see a number of different things. So challenges, well, of course, we've heard from both Kassai, I think, and Lina about the heterogeneity of types of stakeholders on different levels and the need for sort of collaboration, harmonization and things like that. That's one of the main sort of conditions that we find in the region as well as very heterogeneity. is kind of installed based technical infrastructures, different types of processes and structures, and all of those, these conditions, of course, create some challenges for value creation. Looking more specifically within sort of this project, we have identified two kind of main barriers for value creation. One is one we kind of term institutional barriers, starting with a language as a barrier for value creation, and not only language in terms of the different languages we speak, but in terms of the taxonomies that we use, this has kind of been touched upon previously. So we need a harmonization in terms of what kind of phrases and words we use to know different things, and those need to be kind of standardized in a sense, but also in a semantic kind of way. What we actually mean when we talk about things and what data means and how we label it. So there's like a syntactic and a semantic part of the language barriers. And we also heard recently now about the legislative barriers that still exist, just as a side note to lean to your question in terms of how the discussion has been in Sweden. Ironically, it's been, I think, less discussion in Sweden. Maybe it's not ironic, but as part of the EU, this just comes as yet another thing that we need to kind of address. I think it's been more of a debate in Norway, that's at least how I read it. And maybe that's a good thing, in a way, to have more discussion about these things. There are also administrative structures creating kind of a challenge for how to do this. Different kinds of governmental actors with different processes that need to be, they need to be in order to be able to share data across borders in an efficient way, and in order to create value across borders primarily. There needs to be things needs to happen. And the way it looks right now is, again, we have an install base in each country built up of unconnected two kind of national infrastructures and ways of doing things. And it's been sliced in very different ways in the different countries. So this will take some time to sort of find ways and gateways to be able to facilitate communication in an effective way. So these are institutional barriers. And then we have the infrastructural barriers, which amongst others, because I alluded to, or talked about where we need to build interoperability in a much larger degree than we have right now. We also, there are barriers in terms of what kind of capabilities that exist. In order to create value, we need to have beyond technical skills and technical know-how. There needs to be domain expertise and knowledge. We need to have sort of everything from, and I think maybe Prabat will talk more about this later on, kind of the competencies and skills needed to create value from shared health data, or kind of beyond what's the word. Well, it's a challenge to say to me, especially for smaller organizations and smaller stakeholders in this. And finally, there's a resource issue. This will cost money and time and technology and change. Where are those resources? And especially the resources needed to create kind of inter-organizational connections. That kind of needs to be addressed in order for value to be created in a sustainable way. Absolutely. And as a sort of natural segue, when we talk about the resources who's going to help to prop up this grand vision is one of the outcomes of the project is through the identification of new types of stakeholders, as Lina mentioned, where these new pockets of resources are going to be necessitated in order to facilitate the sharing and the use and reuse of primary and secondary health data. So these new stakeholders that are expected to emerge, Lina, do you have any comments on what these new stakeholders at the EU and national level might mean for the Nordic countries or any sort of preliminary insights into how these new stakeholders might shape or or shake up the regions? This is just based on my knowledge on governance model. I think it might be there may be a traditionally public governance models are public. So the main members of these models are public actors and of course you have the traditional collaborators like hospitals, municipalities, labor unions for healthcare professionals, et cetera. And the industry is sort of excluded from being part of taking that around the table. But I, to my, the implications of realizing the HGS and the AI act with their new, with their focus on regulations on the use and implementation of AI, I think that in the future we need to look at how we can create inclusive models that align public and private actors if more than they do today. So that at least from the in the Norwegian e-health sector there is, they are not members of this model. But they need to be some alignment here. They have to work closer on the policy level maybe because these developments and the technology development, they, they, they happen so fast and they are so quick. And they also have to be aware of, you know, all the global changes, the global environment outside of Europe is changing rapidly. And there are some changes which will have an effect on the really, really marker level of, on the European level as well. And then we have to have very knowledgeable actors in these models which are able to interpret this and to translate it into actions which can facilitate the realization of this policy and this, you can actually, so we can discuss the different challenges which are popping up and see how we can work around them. That's what I think. But I'm not, I'm sure, I mean, this is quite, this is really, really big and it's, this little project can't solve all of that. But at least as researchers, we can point at what's sort of, and question, you know, what's going to happen. How can we do this on the largest scale and who are the participants here? But we cannot tell them what to do, but we can question and they can say that they have to focus on this and see, see how, maybe how they can fall out, they can solve it and then maybe say that do we need more resources to do, to do evaluations and research on it to help out, carving out new knowledge here which they can use in their strategically policy journey towards realizing a strong European internal market and, and the, and the safe Europe to live in and the Europe which actually have services which are in line with human rights and are democratic ideals. And I was also, what I also wanted to, to tell you another thing, this is maybe more practical, but I was invited to the Norwegian exhibition which is the National Auditor Office. And I presented this project and another EU project we have and discussed these topics with them and they, because they are following them, they are assessing the Norwegian policy in e-health and so on. And one of the main take-home messages I got from them is that they're, they're really questioning how can we actually manage to educate, educate, educate not only the young people, not only the healthcare professionals, but I mean all the decision-makers on the top level, how can we make them gain knowledge on this and on this quickly. So they are on top of it and they have the newest knowledge when they are trying to navigate in the policy landscape. So then maybe that's something which Minnan Prabat could say, a new, of course, representing a university have some solutions to. Yes, a sort of antidote to the readiness through education, but, but maybe I can, before we go down that path, perhaps I can instead grab onto what you're kind of saying about shining a spotlight onto these, these things because I think it's pretty obvious that the European Health Data Space represents a very major policy initiative. It's not a small change that's coming. It's going to disrupt and really shape the future landscape for healthcare and for research and although it does seem to be highly ambitious, realizing these ambitions will of course sort of disrupt the way that value is currently created for for all these different stakeholders that we've talked about at all these different levels. So I really think that discussing value is quite central to the European health data space and ensure best possible outcomes for patients, the more citizen level, and ensuring trust is fostered between people and their governments around sharing such sensitive information across borders like health data. And also, as you said, this innovation and industry side is sort of ignored to a large degree. They're not so so readily invited to the table. So making sure that their voice is also heard in order to sort of justify the economic resources that necessitate the European health data space realization. So I wonder how then we can best anticipate that this value is created among stakeholders beyond what is obviously beneficial to to patients and scenarios of moving in a seamless healthcare union across Europe. Or maybe we can ask instead what other sort of societal value we can anticipate would the European health data space generate. And if there are any other opportunities that maybe have been identified. So I turn here to to Larsh who represents this value creation perspective. Do you have any thoughts on this? Yeah, absolutely. Thank you. As you say, then the sort of individual level and possible the possible creation of value on that level has been pretty well covered. And that's mostly what we hear about. Looking at conditions and opportunities and barriers within the rural region, we see quite clearly that there's a sort of on a societal level in terms of opportunities for rally creation. I would say that the opportunity to work more with preventive and predictive care, especially from larger stakeholders like like regions and hospitals and other big health organizations can improve significantly with the use of or through EHDS. Absolutely. But then we also see as you mentioned, because under then the healthcare sector as a major sort of or a space where value can be created. New new types of services and it opens up also I think if we can address these challenges we talked about before, it could open up for for a number of different actors to to be part of this within the healthcare sector, especially smaller ones. So the opportunities for innovation grow quite significantly if if the challenges are addressed. And maybe we'll get back to that further on in the podcast, but in terms, but then that will will require collaboration and then we're back to kind of to the challenges, but of yeah, we see quite a lot of opportunities. Absolutely. We also have on a societal level we can I mean the project also also addresses the SOMI perspective. It's been mentioned before. I think many talked about that as one of the things that make this region kind of special in a way that we have this minority indigenous population throughout spread out throughout the Aurora region. And looking at opportunities for value creation from that perspective we can see maybe I mean there are a number of things, but one of the primary sort of opportunities would be the ability for the SOMI population to compare and and learn from other kind other indigenous populations throughout the world to share experiences and compare with them and exchange knowledge based on this and also work with larger sets of health data. This is not without problems of course in terms of that. Maybe we have an opportunity to get back to that if we when we're talking about maybe road maps or moving forward. Well, I think it all does sound very promising and especially like this description of what the most the person who receives the most benefit is sort of you and me the person who's moving between the countries and who you know has an emergency and maybe needs some help. But I but I also think that it's very very important to sort of elevate this discussion beyond just realizing value between the individual and the in the healthcare systems because this big regulatory change affords a lot of opportunity for embracing the disruption to figure out new and more sustainable and innovative ways to do things that now must or are necessitated to be changed. So I think you kind of tapped into that with your description especially of the embracing the the changes in in a way that affords something new to come from it. And this is a very like socio technical perspective. I think and how we sort of like think about society and societal value. But maybe we can tap also into this more technical perspective from Kassai. So how Kassai would you say that different European actors can unlock the potential for value creation from the more technical perspective? Yeah. I think as we all agree that each SDS is creating and great opportunity for value creation. For example, the regulation is kind of harmonizing the requirement for HR systems. So and also creating an opportunity for other digital technologies for for example AI systems or medical digital medical devices or even wellness applications to be seamlessly integrated with the HR systems. So that in a way creates kind of open markets across Europe. So from the industry perspective, creating a market for an increasing market access across Europe, but also from healthcare providers and society perspective, increasing access to new technologies and new innovations kind of easily. So that creates an opportunity for both the industry to increase market access, but also from the society and healthcare provider perspective, increasing access to innovation. But also that for example, healthcare providers given this harmonized requirement, they can easily migrate from one system to another easily. So it's kind of another make make them free to choose whichever technology is suitable and more beneficial. And another possibility is the idea is to increase access to availability of high quality data across borders, both for primary care and secondary use. So this availability would be an opportunity to create new innovations, new research. But to realize this opportunity, the European actors was from the research or industry perspective, even healthcare provider perspective, they need to have the necessary organizational and technical competences to understand and also to use this value. So this requires from member states and the European Commission. Creating a more awareness about the opportunity, this European health status space is creating, basically what that's also what our project is trying to achieve. So for one to understand the current awareness or whether the difference they call us know about this opportunity, but also communicating this opportunity to make sure they start discussing and they prepare for it. However, from the interviews we have conducted so far, there is limited awareness. It's not surprising how the regulation is just coming. However, we I think there need to be more work to be done in terms of creating more awareness, but also discussing how can the different actor actors be supported in terms of training and making available necessary resources to make it happen because we are talking about the actors with different expertise and different level of technical competence with them, etc. So the increasing availability of data need too much, which increasing competence or increasing technical resources from the industry and also from the healthcare providers perspective. Maybe I'm maybe wanting one thing I would add to that is the European health status space, there is a governance structure at EU level, but also governance structure at member states level. So the regulation has created some freedom for members to decide how to organize the governance structure. So that means there need to be a discussion at member states level to see what kind of governance structure is more suitable and maybe that also kind of answers the question of how can members that support the different actors into realizing the opportunity they are apparently status space is creating. Yes, and that is a very big question. You've heard for sure, I'm sure at least one or two PhDs could be put on that. But I sort of like this characterization that everyone up to this point has sort of been describing, which is a sort of mutual or shared interest in the outcomes of the European health status space, which kind of obligates everyone to act in such a way that will help realize the the European health status space. So I wonder what sort of conditions are then needed to ensure that all these different and very diverse European stakeholders can maximize the value creation related to the Hodeas and possibly what sort of milestones we might hit along the way to to that vision. Largest, you have some thoughts for us. Absolutely. Thank you. So again, Minakol Das Special and I think we are in a sense, but in a very in a different sense, we are not special at all, of course, because what we hear from everyone here is basically we can't do the Aurora reading cannot do this alone. Legislation, technology standardization, all of those things are connected to national and international levels and decisions and regulations. So we can't sort of create the perfect value creation paradise up in the Aurora region. Having said that, we are in a very good place in terms of again, as Minakol said in characterizing the region, being far ahead in terms of digitalization and so on, being used to collaboration in a sense. But I think what we can see quite clearly when looking at the conditions or what needs to be done, we can see that in relation to value creation, there are at least three different interconnected levels. The first one is kind of I talked about this before, the syntactic level of kind of knowledge transfer almost in terms of sharing data. And that part is kind of ongoing and it's not there yet. We can see that it's processes put in place in all three countries in the region, looking at how legislation is kind of harmonized in relation to the EU regulation, looking at how we can work with different types of standards. We see that within the different nations, we're working with this sort of standardizing processes and addressing these kinds of issues. So that's kind of well on this way in a sense, on a more kind of technical level. The next level would be kind of the semantic level on what things mean. And in order to create value together with someone else, we need to have kind of a beyond the syntactic conformity that needs to, we need to develop a semantic transparency at least so that we understand what we're doing and on the why and what things mean. And that's basically in order to be able to communicate efficiently. I think the most interesting and difficult one is the final level in actually creating value and it's understanding or having a pragmatic sensitivity. So value is created in a very situated way in that sense where what one stakeholder actions of one stakeholder will affect actions of another and it will affect the conditions and this create kind of a dynamic which is to a large extent that has to a large extent emergent properties. It's difficult, I would say impossible to draw up a sort of linear roadmap to address this level to say that we need to do this first and then we do that and then we do this. It will unfold. And this would in order to to create or build the ecosystem that we all want. This high functioning, creative ecosystem where new ideas coming into operation and value is created in a sustainable way. I think we need to we need to find ways of working together. And it sounds a bit what's the word simple in a way, but I think we need but that kind of what it goes comes back to in pulling in kind of the same direction. And this will be difficult because all the different stakeholders have different targets and goals and things they want to achieve and it will require somehow some kind of monitoring or at least sensing of what's going on in the region to be able to react and adapt to that. And these kinds of road maps are really hard to again, I think it's impossible to draw like a linear one, which we could do on a syntactic level to an extent on the semantic level as well. But yeah, I think that's the main challenge because we need to yeah, so dynamic capabilities on an ecosystem's level and who does that? Who takes who is responsible for doing that? And how do we divide responsibility and create conditions for collaboration? I think that's the main challenge that that's kind of lies ahead. And based on that, I think we should we should realize that this will take time. It will maybe take quite a long time before we can reach the ideal. I think that's what you said when you you talked about the HDS kind of an idea or an idea of what could happen. I think we it will take time and the road will not be straight or narrow or even visible all the time. Well, that's a very good metaphor to sort of drop an imagery of perhaps what's to come with the European health data space and the shared sort of sense making in order to get there. And I think what what you and all the other all the other experts who have talked here today on the panel and that we have definitely alluded to at the very beginning of the podcast is this sort of capacity to to realize or to build this vision. And although it will take time and and other resources, it will naturally require skilled professionals and and people who make decisions that fit together like puzzle pieces to realize where the European health data space intends for us to go in however many years from from now it takes. So I think that the the last part of our project that would be good to talk about in this panel is what sort of training and resources are really needed to increase the readiness of the Aurora region in order to embrace this implementation of the European health data space that you so nicely characterize. So to unpack this we have Minna and Prabat who are working on capacity building. Yes, that's that's a work package we are leading here in all of course with the help of of our other partners. So as I said in the beginning the European health data space is kind of vision we are aiming for and that we can all probably agree and see the benefits that but we also see that these benefits will not happen if we don't have people who can actually work towards those. So we need to have healthcare professionals medical doctors nurses, physios, everybody involved who knows what data sharing means, what it is used for and be like active participants in creating this data sharing practice in their work. We need patients who understand the benefits and the the kind of operational principles of data sharing. We need politicians as Lena, Lena referred that can make wise decisions on where to invest and what kind of regulation and practices infrastructures to support and create that we move towards that vision. So basically everybody in the society needs to understand this vision and work towards that. And of course we at the universities we can play a big role in in making people aware and working on this capacity of people knowing and having the skills on working towards this direction. We have degree programs here in all areas of lives and we can integrate these contents into the degree programs but of course that's not enough. We have lots of people in the work life already who have done their university grace before we even knew anything about European health data spaces. So there's a huge upskilling effort that is also needed where universities can all also play a role. It depends we have different systems in different European countries on how active role universities still have in this upskilling but in our opinion universities have an important role on that too. But of course then we need to also also create awareness in general public in all people who are using health health data and health services. So awareness building we talked earlier about public discourse what do people think about this vision and what kind of discussion takes place that discussion needs all also be guided by knowledge and people need to have basic understanding where we want to be and what that requires of people. So there are so many levels of capacity competence building needed and we at the universities can do our best but we do need other partners in world Pulse. Absolutely and I think that's a very clear demand that we've seen in our research as part of this project for better understanding of what the European Health Data Space is demanding and universities are already poised to sort of deliver that sort of continued education. And I mean as part of this project and in response to this very clear need, a MOOC model module has been developed and I for the listeners a MOOC module was the first for me as well. I never had fully understood it but maybe Prabat could you unpack a little what is a MOOC and what does this sort of educational material that has been developed as part of the project aim to achieve? Who is it for? And why might people listening to this podcast be interested to participate? Okay so one of the key requirements of the project was to create awareness that word has been used repeatedly and for less than much reason. So you know to create awareness of ESTS it's obvious that you do somehow package it so that it's available to everyone whenever they want it and whenever they have the time to go through it and in a language that's easy to understand regardless of what domain you're coming from or the basic requirement would be that you are literate you know English. So that was the idea behind which we started to build something and this is the MOOC that we're talking about so that's massively open online course. So it's meant for anyone and everyone that's interested in the subject. There are no limitation as to when and how long you should take it to be able to complete it however there are some limitations on if you want credits or of it then there are certain requirements that you need to fulfill but for others it's completely up to you can finish it in a day which is unlikely but you can finish it in a day or you can finish it in a month it's up to you it's at your own pace do what you can when you can. So that was the philosophy or that is the philosophy behind any and every MOOC that it's so we provide you the content it's up to you how you want to consume it. So in our case we wanted to create awareness about the ASPS and so that's what the content is about. So we have tried to convert the legislation the the exciting legal jargon into an understandable simplified hopefully a simplified language that someone like a regular citizen could understand that has been our aim to what extent have we accomplished that we'll have to ask that regular citizen once and if and when they take the course. So that was the idea behind MOOC to create awareness. Now I'll extend this into the other things that we're doing towards building skills and competencies. So how we see or at least how I see ASPS is like it's a bold game that has been provided to you and there are guardrails on it and you've been told okay here are certain rules here are the guardrails do whatever you want these are your roles. So the roles by roles I mean the different stakeholders that ESPS explicitly states and the guardrails are the different mechanism the different policy enforcement the infrastructure that was supposed to be right and the end goal is that do whatever you want with the different pieces that you've been given you have the freedom but the objective or the final goal is that it should be towards the service of the let's say the audience that's watching you again and in this case the audience is a citizen because you are taking their time and in case of ESPS you're taking their data so whatever you do with their data it should contribute to the betterment of their life or their health. Do whatever you want to we give you the means give you the resources just produce something that you can give back to the society. It doesn't matter if you're a student, it's actually an academic research, it doesn't matter if you perform a suitable company. This is the end goal that you should abide by. So in the process of discovering what we can do and I would like to preface by saying that there's nothing new under the sound what we have found out it's a it's basically help people understand ESPS and by people I mean everyone because through our interviews it was clear that not many pretty much not anyone understands ESPS and it has gone through an iteration because the recent version was released only in March and we conducted interviews before March so you can imagine what views and the limit and understanding that we had of ESPS the understanding of the people that we interviewed was far more limited than that but now we hope that it's a little better but still efforts need to be made to make this knowledge spread this knowledge and no cause one such way however so when we were going through when we were interviewing people we try to understand where they are right now in terms of the daily lives because they will have a certain role to play as for ESPS when ESPS becomes operational so based on what they know their technical skills and based on what ESPS would require from similar technical skills where we start and we realize okay it's basically data science again nothing new but the focus has been quite heightened now so anyone that engages in ESPS let's say for the second reason a data user wants to know conduct research analyze different data and produce something worldwide it's not just enough to know the different algorithms and different analysis analysis methods you should be able to understand data it's fundamental level what does it really mean to have the help data because it has its own shape, own form and ESPS requires it to be put out there in a certain format so of course you need to understand that format the quality of the data and the the onus of ensuring the quality falls on primarily the healthcare provider the healthcare professional so they need to know how to ensure that quality so the right from the pointer generation to the point of concern the different stages where the data goes through the different transformation that the data goes through that ideally should be known by people who are going to use the data in whichever format or in whichever stage so we came to realize that yes data science is something that's needed so we are in the process of creating two no mooks when we target health data management and health analytics however of course we are aware that there are thousands of online courses that do the same but we are trying to give it a EASTS flavor so we are trying to create the course so that if you just follow what the data does and how it goes through the different stages in EASTS if you just focus on that you'll actually understand EASTS itself if you just follow the data right from the point of origin to the point of consumption and consumption being both in primary and secondary in case if you just understand that and the different different things that are done to the data in that process you understand that you understand EASTS so with that in mind we're trying to create the core create two courses at least right now it's an ideal ideation stage but we're trying to create these two courses where which will be another way of creating that awareness of EASTS so one is of course the the MOOC the introduction to EASTS which is which has been lives in make that's already available but we think a more practical view a more practical take on what EASTS could be achieved through these two courses on health data management and data analytics well that sounds very promising in terms of capacity building and for the listeners I will put the link to the MOOC course that's currently free to take online and I think it's between two to three credits depending on your institution rules and and similar and as these other modules are developed I'll of course update the description box when they become available as well so listeners in the further future then June 4th 2025 you'll you'll see some updates in terms of educational materials available related to this podcast as they're developed by the University of Ulo for public consumption so I think we've given a very yes Kassai just a bit more thing on the discussion so the European has data specer regulation is not replacing the GDPR or any other regulation in particular is kind of living within the regulatory landscape that is already out there and also complement and when necessary building on other regulations like the Data Governance Act and the Data Act. So it should be seen from the perspective of living or interconnecting with other regulations and it's not replacing the GDPR for example but instead complementing and when necessary building on the requirements that is set by the GDPR. Yes, that's a very good clarification. It is very much intended to be a complementary and scaled effort towards realizing something like the European Health Data Space and a very good example of the sort of building blocks related to something like the GDPR. But we are unfortunately running out of time and although it's been very interesting hearing these different perspectives about the project from from everyone, maybe I can instead ask a sort of final wrap up question from from all the panelists here and that is if you could leave the listeners with a sort of brief takeaway regarding the areas of your expertise and what you see in terms of the European Health Data Space. How ready do you think that the Northern Nordics are for the the upcoming regulation that's going to turn us towards a Data Space like like this? So starting maybe from the reverse of the introduction, Kassai, do you have a quick thought on that? Yeah, I think as we we have already been talking about the the Nordic in general has been kind of building on technical infrastructure and competences which are of opportunity towards implementing the European Health Data Space Regulation. So the question the important question is like how can we make sure we are building on the existing infrastructure and competence not creating from scratch. So there needs to be a good discussion on how to kind of build on what we already have instead of starting from scratch. But we are we are we are ahead of a lot of other countries. Yeah, and Lina, I think that additionally the Nordics are very good at implementing EU policy and so we are possible but we have a very high capacity when in our administrative administrative services and administrative areas. So I think we are on our way. The only thing I think which we could be increased is the is the discussion around what these implies in practice for us all. But and when it comes to technical activities and other Norwegian health net is you know they have put a lot of very efficient and very good people on the works so they will do all the technical stuff. So we are on our way. So that's two votes for discussion. How about Larsh? Yeah, just to use your words Cassandra, then contribute to sort of the collective sense making I mean through discussion and as we just heard I think we're on our way in terms of technical and maybe also policy levels but sort of in in order to address the sort of in-between levels just take Prabat's courses. Yes exactly and Prabat what do you think? So I'll address into two ways first the positive ones. Everyone should look at Finland as the prime example that can be done because we have both primary use and second reasons. So if Finland can do it yes or there's not to do it. Of course there will be problems and the not negative side but a little hopeful but it may be negative. So I'll borrow from one of our interviews when the person was obviously often the stick about the years years and obviously saw the potential and say that yes it is possible of course lots of pieces need to be aligned but when expressing his view on the difficulty of adopting it he said that it is supposed to hurt. I'll just leave that. It is supposed to hurt. That's a perfect connection to learning. It's meant to be uncomfortable and take it away Mena leave us with your last impression. I fully agree with the previous talk as that we in Nordics are very really kind of when compared to many other regions in Europe we are we are ready for this and where there's lots of learnings we can share with the rest of the Europe. Of course also learn from the others because this is like showing thing but like like I feel very very confident that in the north of the Nordics we can make this. Yes so on that very positive note thank you all to the panelists today for joining it was wonderful listening to your expertise and thoughts and opinions based on the research that you've been doing as part of this project. So a big thank you to all for participating in this sort of experimental podcast setting but I think it will will in turn make for increasing awareness about the forthcoming European health data space and hopefully inspire some curiosities around what's to become. And as for all the listeners all the things that we've talked about today will be in the description box as usual below and you can follow the ISD just podcast on x formerly known as Twitter at ISD just podcast and otherwise I wish you all a very safe and happy rest of your week. Take care. Bye.