 We can't we can't hear you meet. This is probably the very first time that this happens in an online meeting So we're experiencing a unique event here. She's logging in again. I think we're connecting to the audio Do you hear me now now we okay, but we can see you. Yeah Okay Big blue button didn't like it that I switched devices. So that's a tip for the next one Don't switch devices in between but without further ado Good morning everyone. Thank you for your patience. I hope this soft gray Monday morning is treating you well Will be kick starting. It's not treating you well. I can already see nodding no, but We will be kick starting your week with a discussion about the health information Landscape in Belgium and it will leave you pondering for the rest of the week And I hope it will slightly even just slightly change the way you think about our health data and how we go about it we are lucky to have three experts with with us here today and We will discuss our health data from three very different angles I Will introduce these three experts very briefly, but they will tell you more about themselves later on We have Bart measure you can wave at the camera Scientist at the University of Ghent. We have Karen She is an economist working as a data analyst and product project manager at IMA or aim That's the intermutualistic agency in Belgium and we have Brecht de Vries Schouwer Epidemiologist at Cienzano and professor risk analysis at the University of Ghent We are going to start with a very short introduction I'm going to ask you what you do and why are you here? I'm going to ask Karen first What do you do explain us a little bit about your job? Thank you So I work at IMA and we are a non-profit organization that gathers all the health claims of the Seven Belgian sickness funds and we gather them in one big database These data are made accessible for users these users are policy institutions These are researchers many of universities and also to the public That is in a nutshell what We do at IMA Very useful And why are you here today? So I hope to learn a lot from the other speakers around the table And I'm also very curious to hear questions from the public and we'll be happy to answer Super that's going to be a nice synergy then Bart same question to you. What do you do and why are you here? So I'm Bart. I'm a post-doc for post-doc for a researcher at the Faculty of Sciences at Ghent University I'm a computer scientist and my research mainly involves data analysis and developing tools for that often these projects include biological data such as Identifying which bacteria are present in samples Using protein and DNA data And I also teach a course in data visualization And I'm here probably because since last summer I've been Reporting daily on the current COVID situation in Belgium based on the open data provided by Cinsano Initially, I only did this on Twitter where my follower count quickly rose from around 500 to almost 8,000 now I think including many journalists, politicians, even ministers And since January VRT news calls me every weekday for a quick interpretation of the daily numbers for the live blog on their website and in addition to reporting, I have also been campaigning to make more data available to the public So you got a second job during pandemic interesting And then Brecht What do you do and what do you hope to get from this session today? Yeah, good morning everyone I'm working as an epidemiologist at Cinsano since 2016 so formerly the scientific Institute for Public Health and My main activities are within the health indicators unit of Cinsano Where I tried to make best use of all available health data that exists within the Belgian health information landscape to try to give some plausible sensible ideas of the health status of the Belgian population So I try to quantify what the diseases are that make us ill what the risk factors are that cause these diseases What the inequalities in the health status are that we are experiencing? so I'm mainly a user a user scientist using all available health information in in Belgium I'm also discovering what is available Discovering how this is used how this can be used how it is not always used to the best possible extent So this general interest in health information health data also Made me think more about how to make the bridge towards other researchers People who might be able to to use these data, but maybe are not yet aware of what exists and how they can use it So in that context we have recently started up a project called a hat which is funded by Belspo the federal science policy which aims to Increase the visibility of that Belgian health information landscape Which also aims to bridge the gap between data holders and data users And of course we will talk about that later on also take privacy issues into account so I see myself as someone who is a bit on both sides of the Riverbank trying to see what the needs are What the difficulties are and trying to think about how we can solve these difficulties? thank you Why are you here today to discuss that specific part? Indeed. Yeah, so I integrated both questions. So I'm happy to take every opportunity to Talk about the Belgian health information landscape and to talk about how this can be valorized to the best possible extent I'm happy you say that because I wanted to paint a little bit of context Most of us that are here as an audience I think everyone knows that Belgium has a very rich health information landscape. We're good at this We have valuable information Who would like to explain a bit more about this information and why it's so valuable? Maybe Brecht you can can continue on this Yeah, sure So the richness lies in I think first of all the fact that in Belgium we have a unique person Identifier which is not necessarily the case in every country So this means that we have a strong potential to integrate to multiple data sources and to Strengthen the valorization potential that we have within each of these data sources The richness of course also lies in the multitude of of data sources of routine Data sources on health that we have and we have of course Karen and I see in the list of Of the audience list many other colleagues from the intermutualistic agency. So the information On health care use in Belgium is an extremely valuable source It is nationally representative and exhaustive more or less We also have other important data sources such as the hospital discharge data Managed by the Ministry of Health the causes of that data managed by studbell the cancer registry different survey surveillance systems managed by Sien Sanu So I've now mentioned many different Organizations and this also shows a bit the limitations that we have because these different sources fall under the responsibilities of different organizations and in Belgium we don't yet have one single national health database or System that allows to in a routine way Integrate all of this information. This is the case in Denmark This is the case in Scotland some other countries but not in Belgium So the richness lies in the fact that we have a lot of good sources We have the possibility to integrate the sources, but the challenges also lie in the Yeah complicated Processes that we need to go through to have access and to integrate and further valorize these sources We'll get into these challenges in a moment I Did forget to mention if anyone in the audience has questions You would like to ask yourself because as breakfast mentioned, there's a lot of people a lot of colleagues around. I bet you have some very Burning questions You can drop them in the chat for later and we can answer them And make sure that you in the chat maybe give a virtual applause already to the people that are Here with us today Brecht you mentioned Yeah, we have a lot of good resources it might be complicated those challenges We're going to pick up later But maybe Bart can shed a light on the opportunities that lie here in the open landscape Given the fact that you have now a second job during the pandemic Yes, sure, I Think you have to make distinction between two types of data On the one side you have open data and the definition of open data is it's publicly available Everyone can do it with everyone's reuse it in any way So that's one thing and then on the other side you have data. That's potentially available for research Which is maybe more privacy sensitive From my research and for the reporting I've been doing at last few months I've been mainly focusing on the open data. So basically reusing what's out there and you're valorizing it getting more out of the data than then The official instances are doing And then next to that, of course, you have the research data and there Yeah, you have more challenges first You have to know what's out there because it's not as publicly listed as the open data, which you might stumble upon and then Secondly, you have to get access to the data Which sometimes involves an application process a reviewing board Some legal limitations You might not have experience with yourself as a researcher Yes, I know that Karen has already put a lot of thought in this Karen, can you maybe explain us a little bit about these challenges that we face because I hear a board I hear an application process legal limitations. How does that work on your side? Yeah, I if I can pick in on what Bercht already said Indeed to integrate a different databases on health in Belgium We need to Take some step forward in the legal Technical and ethical issues to make that more Easier for users to get access We at EMA make our data available so our data are also subject to GDPR regulation we have of to give an idea of our data in our data set We have all claims data of the Belgian Compulsory health insurance that means that each record in our database is one healthcare provision a doctor visits a drug prescribed to you a Blood test and so on so our data contain more than one billion records of by per year and of these records we have all kinds of Individual information. What is the patient? What is a doctor? What is the date and so on? So you see that this is highly Sensitive information that has to be protected from misuse But we make it as accessible for our specific database and also one or data want to be linked to other sources the legal technical and ethical Issues are already in place and Maybe that is a Bit early in the discussion But what we are working on for the moment that is to help users in Disaxis because even if the technical issues are in place the pathway Can you can be very long and very difficult? so we try to help user by ad hoc services ad hoc support and also by Developing generic tools that help users to To interpret to understand the data But maybe I can elaborate on that further later in the discussion Yeah, maybe but can begin picking in on this because you probably have some experience now with what we are getting getting access How did how did this go for you? Well, I'm a big fan of getting more of the restricted data to the open data part For some data like you said it it isn't possible because of the privacy sensitivity But for other data if it's aggregated on a high enough level that shouldn't be a concern But right now in the current pandemic we still see that that some data That's available and could be made available isn't for example The number of tests that are Executed by age category and those data are available are aggregated. So not privacy set price privacy sensitive And are kept from the general public for some reasons for example And as a researcher you probably could get access to the data if you Requested it, but then you would be heavily heavily limited and what you could do with it So you wouldn't be able to publicly announce so that those data Would you like to reply because maybe you already have some? Yeah, I understand perfectly well what Bart is Yeah, his his requests are so we also make our data available in aggregate statistics in an open data base That is called the EMA up last there. You find a lot of statistics about 20 teams. We have a few hundred indicators that are Available by individual characteristics age sex and also by detailed geographical location So not only in municipality, but even the neighborhood Where people live and these data are really open data, but the problem we have that is time and And and and capacity it it takes a lot of work to prepare these data We are expanding these indicators every year and we are even developing tools to get more indicators at a regular pace in these database So on the one hand you have to have the capacity but on the other hand It's not always clear what users really want to see in these open data I We have now a few hundred indicators in our data But we we are the type of statistics that you can drive for From our data are endless. So it's not always very clear what are the most useful statistics to Made public to make public in such an open database So for that for the moment, we try to respond to requests from or needs from our partners Don't even new statistics are developed. That is in line with a study of our partners that is in line with Demands from other partners. So that is the way we try to fill this gap Nice you're on both sides What happens? Yeah, thanks. Um, so indeed I understand Bart is a question and this is a is of course not the only one asking this question Also have to say of course that I'm Even though I work at C&Sano, I'm not the person making the decision So I cannot comment on the the specific question But some I have some general thoughts on the open data issue Especially linked to covid and I think we all agree that covid has been a huge shock for society But it has also been a shock for health data Leading to some very positive Effects, but also some very negative effects that we all have to face with One of the positive effects is that it has shown what the value can be of open data and In the past as Karen has also mentioned there have been some initiatives to work towards interactive databases Open data Actually still remained rare. So the actual availability of machine readable Data sets still remained rare in Belgium in the health landscape So one of the positive aspect that we can take from the covid crisis is that we have now very good examples Thanks to Bach amongst others, but he's definitely one of the best Very good examples of the the added value of having these open data It allows people to To make their own models and we have Kunde Forche who is regularly updating his models on and making them available through Twitter very valuable It also helps people to Sometimes confirm the messages that we as an organization Draw from the data or maybe come with new messages things that we have missed So all of this is to me a very huge advantage of open data But as I said, it also led to some negative consequences and one of the main one being the the increased attention to data privacy and I don't know if you need to go into details of GDPR, but GDPR has some restrictions on the use and reuse and Of health data At the same time GDPR is not very explicit on what is possible or what is not possible So it allows for a lot of different interpretations and what we see This is an observation is that The the attention drawn by the COVID crisis to health data Is making some people some organizations to be even more critical on what they want to share or how they want to share their data So again, this is something that we have to understand We have to talk about data privacy talk to the privacy advocates But we also have to counter that with a positive scientific Message with some very positive examples and one of the best examples that we've recently seen was the studies done in Scotland where they were able to use the data from all the people living in Scotland linked together to To prove the effects of the single dose AstraZeneca vaccine a few weeks after The vaccination campaign had started. So this is a very positive scientific message that Being able to use such data, which are privacy sensitive. Yes, but being able to use such data can help Save lives and this is something that we need to put more in the in the forefront to be able to prove that Using such data with all the restrictions that are in place and that are necessary But using such data to support population health remains a very crucial thing that we as scientists Should be able to continue doing Are we ready to start doing something like this in Belgium right now? Well, if we were to replicate exactly what they have done in Scotland, then I'm afraid that This today would be science fiction in Belgium for many reasons Processes in Belgium take much more time than than they do apparently in Scotland or other countries Another restriction is that we don't have in a nationally representative GP register. So we are also missing out on some of the potential data That exists in other countries So yes, it is possible, but maybe we will have the answer by the end of the year. Well, they had the answer after a few weeks Maybe if I Isn't also part of the problem Taking responsibility some organization My BCN sound or someone else saying we are responsible for this We will do this and make sure it happens because I have the feeling that right now Everyone points to each other and says well, that's for the regions regions point point to the federal level Stuff like that happens and I'm get lost in that way If I can take a specific example from last summer Apparently Belgium had a wonderful system of registering the passenger locator forms That was demoed and in all of Europe and if I may believe the responsible minister But the data from that system was kept inside the system and wasn't used to do any analysis of some sort So we had epidemiologists for statisticians who were wanting to do analysis of the effect of of travelers but they couldn't get the data and Everyone thought data is available or it isn't up to me to make it available. So nothing happened Yeah, it would of course be a lot easier, but most of those questions would require a strong legal basis and These legal aspects are Sometimes Standing in the way of a more efficient and a quicker Analysis of data So one of the things that we will try to do within the project that I already mentioned was to evaluate What the legal basis for for health data are in Belgium? And which options there would be to to improve that And for instance, you've heard of the the new law on pandemics that is in development Hopefully there there can be a very strong and explicit Paragraph on on the use and reuse of data to make sure that we can act in a much Quicker way than we would be able to do today Karen, do you have any background on this? Or anything to add Yeah, I can only agree that indeed Yeah, we are in different situations here for for example for email data But also for other databases in Belgium that exists since some time there is a legal basis for access. It is not Sufficient, okay, but there is already a legal basis and these are also routine data So data that are and that is the problem data that are not collected for the purpose of research But for other purposes, so I understand that if there is a new database like the one Bart is talking about a passenger Data on on coffee tests then Yeah, it is a new database that has been collected for another purpose than for research and It's not Yeah, there is no legal basis for making them available for research So I can only agree that there is room for improvements on the use of this kind of routine data Especially when they are new because for existing databases, we have some elaborate legal basis But I think this might be part of the problem because if you want to set up a system for registering passenger locator forms Yeah, one of the obvious things you would want to do with it is actually use the data so maybe they should have thought of that when they were setting up the database and designing the system I see I see the chat also blowing up a little bit This topic is striking a nerve, which is good. Um, I just saw one I Would strongly disagree that common good justifies infringing on data privacy There's an article that allows linking personal data for COVID-19 and it's not even acceptable even by the UHO. There are alternative solutions like data intermediaries So we need to look at alternative solutions, not more of the same solutions Could any anyone reply to this by Isabel de Zier? How do you feel about the tension between the individual and the common good? Well, and I think these are the questions that we have to be very open and explicit about and and try to find Yeah, a common ground. So I would be very happy to to learn about These alternative solutions. I would also be very happy to learn more about why according to the the person in the chat This Wouldn't be allowed because we know from other examples that Approvals are being given both in Belgium and in other countries. So again I'm very open and interested to learn more from different people who have their own specific Expertise and experience in this domain try to learn more and try to be open About the use and reuse of such data and of course all the implication that that brings Okay Du Pachter, Kijgen want to add something to this Well, maybe yeah, I See the problem with with specifics privacy sensitive data but Like I said, you have to make distinction between Data for for research up to personal level, which may or may not be needed and the open data and of course and the open data No Identifiable Stuff should be present Except maybe if the person explicitly allowed for that How do people now? Sorry Karen go ahead. Yeah, I I would like to To affirm this and also Also make the comment that even if private privately I data that are Sensitive to privacy issues when they are made Available to users and that can even be individual data There are different legal and ethical steps that are taken such that They cannot be misused by users and it has to be do with anonymization with pseudonymization and Also with restricting the data explicitly to the research question of the user so Even if you have access to Privacy sensitive information, it doesn't mean that you can identify the people and that is the environment that is set up and has to be expanded to make these data available to To to interested users So it doesn't mean sorry just a point I want to make is that if you have private data, for example, I'm working with all your private data All all day long and my colleagues are also but I cannot identify you I can even not can identify myself even if I have a lot of information about myself I hope that that answers Isabelle's question a little bit And I hope to invite her In a moment to also speak about this And I see your Responding with pseudo and anonymized data is still risky to publish as open data in in his opinion I wonder But I think that also refers back to what I was saying before so there's no black and white Very clear good answer to what is acceptable So it's even though there is legislation it still remains up to the the data provider The DPO of the organization to decide what is possible or not and Nowadays as I said before we see that in some organizations There's more a tendency to be more restrictive than not restrictive because if something would happen then of course all the Responsibility falls within that organization. So this is something that we need to be aware of I Don't have an immediate solution to that But I think a countering that with positive scientific examples of how they can be used in a in a good way Is at least a good start to that answer Yes, and if anybody in the chat has some of those Positive examples feel free to talk about those as well So I hear that even though we would have a legal framework that would make Valorizing this data Easier it's still up to the people using it to interpret it in the right way and to use it in the right way I As I understood can you also at Ima make sure that people are educated in a certain way to You help them at hook and you help them personally to reach the correct data Do you also have to support them in how to use that data and what to do with it? in in the GDPR atmosphere Yeah, on the legal issues indeed we Yeah, we Help users in defining the data that I need for their research and to our Our role is then to find a balance between The privacy issues what data do you need for your research and and the availability of the data so As the the role of the DPO has here been Pointed out so our DPO will for each request that a user has for our data Will evaluate cell per cell variable per variable whether there are really needed for the research and whether they do not Include the risk of or high or low risk for identification of individuals and depending on the Depending on the reason the conclusions of the DPO sometimes Data are refused to Be used in by by researcher or they are obliged to only work with a sample or things like that so we We try to help users To define their data in such a way that their request at the data protection authority will be accepted and that is Yeah, it's sort of service that Is needed and will be needed to help researcher in the access to data Even if all technical issues will be in place in the future for Yeah, a large health database in Belgium. That sounds extremely labor-intensive, but justified Would there be a way to make that easier that process because it feels like when we're in the middle of a chaos that Might be unmanageable almost No, it's labor-intensive. You really need Personnel for that. So we as a researcher, we know this the policymakers that are thinking of big health data Are not always aware of it. So it is overall to make them aware of it. It is labor-intensive, but it can also be picked up by Generic tools and that is what we try to develop as well. That means detailed information on our websites clear procedures that Everybody has access to Meta data on our website explaining our data explaining every variable in our data set and so on so the development of these the generic tools also helps the The users to accelerate their pathway into the access of the data So it's it's in progress. I'm going to ask but what would you need? From such tools, what do you need to advance to valorize our health data? well, I think maybe if I go back a little for one thing the The support and and applying especially the legal support is very valuable because yeah, we're researchers The legal parts are not our core business. We wanted to research and not get involved in the legal stuff and It's it's complicated. I think the Improved attention to privacy is definitely a good thing But a side effect is that yeah, a lot of a lot more people are Maybe Yeah extra sensitive for those kind of arguments and that in bigger organizations the number of legal people went up in the recent years, I think Right might also comment on that. How that's going in in shinsana, for example and then with respect to the metadata, it's also very important because If you don't know what the data represents, it's very hard to work with it. So you need the extra information To correctly interpret the data Yeah, if I may add to that, I think this discussion also points another general thing that I that I want to note is that Making best use of such data requires a strong and positive collaboration between Researchers and and data holders and I think this is something that we should all be be aware of But maybe this is not yet the case today but Such collaboration is sometimes even inevitable You cannot use the EMA data without having ever contacted EMA for instance But I think with the examples that Karen gave is that these organizations are also putting in place efforts To really help researchers and the processes needed to be able to have access to these data are very complicated for outsiders But they are there to really help you guide you through the process They implement some of the steps of the process themselves So they are really there to to support you and this is also one of the key philosophies that I want to Promote through my work and and my future project is that We can the best way forward this together. So as data holders, we should all Understand and and realize that External valorization of our data is very valuable sometimes even necessary at the same time data Users researchers should understand that The the data holders are there to help but are also the ones who have the best knowledge about these data So even if the technical processes and the legal etc have been Carried out there is still a big win in having a good and solid Collaboration with the data holders In order to make sure that the the conclusions that you are drawing from the data are indeed valid and correct So there's a big win in working together But this requires that you had the researchers understand that this collaboration can be in their own Value and that the data holders understand that external valorization of the data can be in their Benefits, I'm going to point to the chat for a second Because I do think I agree that collaboration is the only way up, right? I See questions passing by about metadata They want explanations of what it represents where it comes from how it can be interpreted from here, for instance, and Karen also replied already to that by Informing us that they're working on tools to make that more available I Also see that there are ways to Identify without Well infringing on privacy if I understand correctly Does anybody want to reply on what they're seeing in the chat? Do you have access to the chat by the way? Okay Who would like to respond to here? For instance, and maybe I can also Unmute here give me a second to find him. Sorry. I need Okay, I think I did it here if you refresh then probably you can do the echo test and then We can have you live on screen as well. I think you will have to refresh first So he is talking about metadata while he refreshes. Maybe Who would like to pick in on this? Maybe but from your experience You can talk about this as well Yeah, like I said A few minutes ago. I think it's extremely important to correctly interpret the data Not only how it how the data was collected, but also if there might be some unintended Side effects due to the way it's collected. So that's very valuable to understand if I go back to the COVID situation, for example The the number of tests that are reported are reported on the day that the test was executed But if you look at the case data, they are reported on The same data sample was taken. So that's a subtle distinction But if you don't take it into account, you can it can lead to two wrong conclusions Who do you turn to when there are these subtle differences that you cannot figure out? Is this also the data provider that you will contact? Yeah, so I think CmSano has been doing has been doing a good job. Actually, aside from the comments that that they that they Don't provide Enough open data, but the data they provide Is machine readable in an okay format? So CSV format, JSON format They have I think it's called the cookbook where they explain all the variables and and what they should represent So they're doing that in a good way. Maybe only The license the exact license of the data is missing But generally it's okay. If I have a question, I Talk to break Okay, I see I see some principles about fair passing by and I'd love to address Karen in a moment for this but can Can brechtendkaren maybe first explain a bit about the metadata standards? How are you working with these? Maybe just a quick thought on that from my side. So when looking at the different Data sources that exist within Belgium. I don't think that they all Have the same level of or that they all report their metadata in the same way And I know Ima has done a good job in the in developing their own metadata portal So thanks a lot for that. But I think there's indeed a Much to be gained by further developing even harmonizing more Standardizing the the metadata descriptions across the different health data sets that that exists within Belgium Karen can comment on that Yes indeed we have we are in the course of developing our metadata. It's a very labor intensive work We are now one year further and I think we are about a one-third of our description of our variables I see there indeed passing what standards do you follow we try to follow standards of Administrative description of administrative data sets so that our routine collected data and these are very different from data that are Collected for for example in the frame of clinical Clinical research so there are different types of standards that have to be followed depending on the data source itself We try to The to develop our data so Such that they respond indeed and the word has been Picked up or proposed by Isabel this eager Fair principles so that our data are findable accessible interoperable and reusable and We will be happy to work together with the other data providers in Belgium from the moment there This will be developed at a more integrated national level and to share our Experiences or input and to maybe standardize even more in In relation to the other data says sources in Belgium or international sources I'm going to call here to the stage You've been very active in the chat Not just about metadata, but also privacy control on a national level Tell us about this. What would you like to ask our panel members? Yes, do you hear me? Okay, fine Well, I have a lot of experience in in in in medical environments also with Data analysis and and data privacy. I have worked 21 years with Proxima's a belgium Proxima's So, yes, well my major concern here is clear metadata and unique uniquely describing each of the of the attributes of the data and That cannot be misunderstood by by by the users The biggest risk is that some data is is interpreted in in a wrong way wrong units or wrong Yeah Or in the way you can use the the data so yes There is no one one single solution. It's a response. It's a shared responsibility and I think one one platform that can be used by all of the parties Should make a larger difference Okay I may maybe follow up on that so one of the questions that we had in the chat was From Marco, where does the standardization and harmonization? Take place. There were also questions before on the I forgot it. I lost it here on the EU data governance act So at the moment there are a lot of things moving in Europe and there's also in Belgium to try to set up a national health data or authority or at least to bring the key people within the Belgian health information system together within Within Yeah, a consortium or at least a brainstorming group that can Accommodate the requirements of the data governance acts. So one of the possible Objectives or activities of this data authority could be to think about Harmonizing and standardizing the the metadata across the different partners that will be Involved in this authority and this can then be one step towards a much longer term perspective perspective of having a more fully integrated health data system But at least this is what is currently being put in place and Yeah, I strongly see this as a big step forward in the Belgian health information system Okay, can you tell us more about this? Is there is there a place that? Some space that we can go or people we can talk to because I've I've heard from different people like they're they're Okay criticized and perhaps but mostly what I hear from all sides is we want to come together Is there a way to get in touch or how to get involved? Yeah, so the idea within the data governments act and the health data authority would be to have Or to bring together the key players within the health information system So that is not necessarily the same goal as reaching out to say the general public if that's what you're referring to But I think we should try to aim further than what is asked for in in the data governance act and also increase the visibility of the Belgian health information system Not just to the people who are closely involved but also to the outside world and this is linked to Amongst others the concept of the the national notes which have been proposed in the framework of several EU health information projects that we have also been Leading within C&Sano and there there could be a strong potential to Create for instance a Group that is able to be contacted and to reach out to the general public Maybe even have annual seminars where we can bring the people together Present them what we do how they can work together ask Experts and researchers to present how they have used the data so that there can be a much stronger and much more open and explicit interaction between data holders data users Privacy advocates and other people who have an interest in health data Because I do think we have a lot of Education to do I hear voices on one hand saying I don't trust the government with my data but on the other hand they use ways and just Put their data out there like it's nothing so I think we have some work to do there But We have a couple of minutes left and And What I hear most is this collaboration We have been spared from pandemics like COVID-19 for a long time and we know that there will be more challenges coming up maybe a different pandemic or Other challenges that we will face So this this collaboration might be able to prepare us for the future I Would like to involve the audience I would like to today Not just speak to the the well the experts. Let's say because we need the public to also understand I'm going to Block can we can we unblock everyone else? Yes? I will do that. That is nice. Thank you So we know which data we have we know what we need to valorize them in order to enhance our society We know the challenges we will face When we try to valorize this data, we know we already have some hurdles But we all face those new challenges with which means when we need a common understanding a framework To answers those those new questions that will rise So we can can prepare the public for hey, we might need your data for the common good This framework can fuel openness and collaboration between data holders scientists and us as individuals I would like to ask everyone in this panel, but also the people in in the chat to Tell us what would you like to see in this set of values? And I saw Isabel the Zegir already mentioned fair Karen also Touched on this already. What would you like to contribute to this set of values? And I'm going to ask Karen first and then maybe Isabel can also tie into this What what do you see in this set of values that can prepare for the future? So, yeah, what I already said The fair principles are guiding principles in making data accessible and I think We should Internationally recognized principles and I think we should From our sites data providers Make efforts to to to meet these principles. So not to invent new ones or this is a nice framework Yeah, let us stick to it and let us In the first place try to meet these principles from From our site Isabel, maybe you can also Refresh so that we can can hear you if you would like to come to the stage if not You can definitely just type out what you think Otherwise, we will give you a moment to refresh and then go through the echo test But I wonder What do you think about this? Is this framework sufficient to get started from or do you say like hey? This is a first step we need to take Into educating our audience. How do you feel about this? Can you hear me? Yes, I can hear you go ahead Yes, thank you and get some of the session computer science is with 30 years of experience in health and farmer and I'm also a member of an organization called my data and the key there And after a quarter of time looking at data is that you put the individual at the center They control the data within what is Data intermediary as part of the EU data governance act and if they do that Then they can be in control and decide to share or not to share So privacy can be solved and there are a lot of standards behind that and on top of that If you integrate the data at the level of the individual you can also then solve a lot of the interoperability problems and so Brett when I was saying alternative solution, I think the way we work today is problem centric We want to solve a problem and we collect and manage it to solve the problem We have to look at a different way, which is to look at individual centric And whenever there is a problem towards the patient or the citizen to share this specific data to help solve the problem And if we look at that way, I think it opens a lot of possibility and the EU data governance act I mean allows to regulate your organization that will do that and it's extremely powerful Thank you for that Isabel because I think Bart also touched upon this shortly Because he said is there a way for citizens to decide themselves who they want to share your data with To which Raaf responded the solid project is working on personal health data So that would mean you are owner of your own data and whenever somebody asks for your data You can say yes or no if they're very transparent about what they're going to do with this data Bart, are you here? Would you also like to add something? Or maybe Raaf You can refresh and then go through the ecotest and add I saw everyone nodding vigorously Go ahead Yeah, maybe with respect to privacy and good full of thumb as always to Not do things with data that Isn't expected by by the the the person that it's about Except of course Everyone has different expectations. So it's it's sometimes hard to to find a Middle ground of what can a person expect that his data will be used for Um, so I think that's important um Maybe um on a more practical level. I think what we missed here and already touched upon this is um some kind of um central Responsible agency That maybe not not Notice is is responsible for um For making available all data, but but at least a central point where you can ask questions and They figured out or redirect to to where you have to be because right now You can send emails to people and then it gets forwarded and forwarded and In the end you sometimes end up where you started. So it's not clear Who's responsible and where you have to be even if you want to to formally request some some data Yeah, I I I see part you are in contact with Karen or the organization Karen works for Um, you say it's it's valuable the help that everyone provides there. You're in contact with Precht But Precht and Karen are you for instance working together or how are your organizations working together right now? um Yeah, Siencano has permanent access to our data. It is one of the public institutions that Uh by law have access to our data such as the federal planning bureau as well and Rizif Inami as well Or the health knowledge center the kasei So that is uh one part of the collaboration and then we work together on different Uh individual projects And how do you stand? Um Or what is your opinion precht on the on the fair system? um Because garem as she said We already have a decent set. We don't need to reinvent the wheel Um, how do you feel about this? Yeah, I think as I said before it would be useful if the different players could Use a same set of of uh metadata tools at the same time I think it will always remain necessary to to have this this close and constructive collaboration Because even with Detailed metadata you will never have the same level of knowledge as the people at ima for instance have on their own data So there will always remain a big win in in setting up uh and maintaining a close and good collaborations Between uh, yeah researchers and and data holders data managers Um, but uh, I fully also agree with what bakht was referring to to have Uh in in our terminology, we call that the one-stop shop And if you can say that 10 times after each other, then you can join sien sano Um, but the one-stop shop for health information health data like a central hub Which already exists in some other countries? Which doesn't have access to all the data, but at least has A broad overview and can put you in contact with the right people or refer you to the right websites um, but then at least you only need to remember one One name of a website and not thousands of different names. So that can already be a help To yeah start finding your way in the belgian health information landscape This collaboration is being brought to life as I understand How can we keep up to date about it? Where about and maybe that one-stop shop website will come to life where where where will we find this information? How will we discover? Yeah, um, so once it is in place, we would be very happy of course to share the the information with your group and organization um At the moment, we don't have any Concrete details yet, but uh, the idea would be when this will be in place that it will be disseminated in a in a white way And at least you can already start by following me on twitter and then okay How can we help you? How what what uh, if you you three had a question for the audience, how Could we help you? Tell us what you need because i'm going over time. I'm sorry. It's very interesting. I'll end with this question No, I would say in general keep being interested in health data, even if covet will hopefully disappear Because there are lots more health issues that need to be tackled Where there is a lot of valuable uh expertise In academia and other places So please remain interested in uh in health and health data And help us solve the the problems that we are facing today Karen, do you have a question for our audience? uh, yes, I would like to uh To add to what uh, brecht says uh feedback from users is of uh invaluable information for data providers and uh Yeah, if you have questions comments Please let us know Do you also have a twitter account or Somewhere people can ask those questions because i'm going to now blog brecht's twitter Then barts and yours the easiest way is through our uh website or contact point on the website Okay contact point on the website. Uh, can you remind me where it is later in the chat so I can send it to everyone? Yeah, just email contact and you will find it. Okay. Okay. And barts, what is your question to the audience? Yeah, um, I would like to echo what brecht said, but but not only feedback is not only important for data providers but also for people doing things with the data because um After a while you become sort of an expert with the data and it's not always clear what the general audience Um expects of it or how they understand it and by getting feedback by getting questions Um, you get to a better end result and you improve on that So I think that's important All right Thank you very much. Uh, this was very interesting. Thank you for your time. Um, yeah This was very valuable Astrid probably wants to add something and uh, if you want to stick around or ask some questions, that's, uh Totally fine. I don't know if brecht and karen still have some time. You can stick around as long as you like Uh, and I just want to add also thanks to the people listening and the people who contributed in the chat. So um The show that there's a lot we can learn from each other and I'm looking forward to continuing that in the future Um, I suggest that we end the recording now, but that we keep the chat open for A few more minutes. Um, so the speakers if they have time, uh can still Uh reply to to some questions if there are any