Healthcare Data Privacy and Ownership

[Music] good morning um everybody here who is with us now in this panel discussion my name is ingrid klingmann i am the chairperson of eftccp the european forum for good clinical practice that is a not-for-profit organization in brussels that brings together multi-stakeholder audience from industry from ethics committees competent authorities patient organizations other stakeholders um in the medicines development process to proactively and jointly discuss problems and find solutions as far as possible it's my big pleasure to um to welcome my panelists here who are going to the colleagues who are going to join me in this discussion about healthcare data privacy and ownership and this is something that is very core to our activities in the fgcp because where science and ethics meet is and technique technical aspects and quality meet that is where the the the need for discussion and joint solutions is found so i have with me uh nina jorge from the uh university of leuven here also here in belgium then hernando geraldo from birmingham ingerheim catherine konaki from hl7 and anka petra from 23 consulting and all my colleagues will present themselves and also um yeah help starting the discussions here by giving two points that uh they find particularly relevant when we talk about healthcare privacy and ownership and in relation with blockchain because that is our main topic today and the background for our discussions here so may i start with catherine welcome absolutely hi i'm catherine cronicki i'm the secretary general of the age of seven europe foundation in brussels and i'm also honored to be the president of the european federation for medical informatics so in this dual role the topic of our panel today privacy and ownership of health data is extremely important and we have done a lot of work to promote the adoption of standards for interoperability safety and trust uh among people that are participating in clinical trials and and and this is uh the keystone of the new society that is coming up which is extremely data driven and where data literacy comes to play a major role probably more important than digital literacy itself the two points that i would like to highlight is that we need to pay more attention to data provenance and data quality moving into the future and in that context the standardization is elemental thank you excellent thank you very much kathleen um anka would you like to follow sure uh well i'm very happy to be here once again at the european blockchain convention um i am a pharmacist by training and i am the founder of 23 consulting which is a paris-based company that is specialized in supporting healthcare organizations in their blockchain projects i also wear a couple of different hats in this industry i help run and manage the healthcare data institute which is a french also european think tank dedicated to healthcare data and i'm also right now writing a book about the value of health data for patients so the way i look at data ownership is a lot from the patient perspective and how can blockchain help empower patients to have more control if not ownership of their data very good thank you very much hernando would you go next you are unmute i am hernando geraldo i'm from barangay gohan at barringer i play a bunch of different leadership roles within the clinical operations side i'm also engaged in a lot of innovations and digital outside the company um that brings me to pharma ledger we're on this the point of contact and lead for one of our use cases um and and i think it's important for me to to also share with you that um this is not uh my career choice i did not wind up in pharma i did 25 20 25 years of business outside of pharma so i come in with a unique set of perspectives and eyes to the work that we do which i think is is really interesting i think what's important for me is is a patient's ability to connect with their own data but also to understand um the the connectivity to these processes that seem sometimes a little bit medical and also distant so for me it's important for them to understand how we're using their data and their data safe okay very good yeah we have already a range of perspectives that we are going to cover so last but not least nina uh i have you last because we are most frequently in contact so i know that you don't uh mind that you are last year not at all thanks a lot ingrid uh it's truly a pleasure and honor to be here today long among all of you uh my name is dennis gargive i'm a privacy lawyer by training and currently working as a researcher um in law education center variety and ip law in belgium and i'm also a co-lead of the regulatory legal and data protection framework for a pharma ledger project and um i've been closely involved with blockchain for quite some time now and i guess i'm one of the one of the many who got caught up in the hype a few years back but i'm extremely happy to see that there's increased interest in the technology because there's there's a lot of potentially designed properly and adopted where appropriate of course and my work uh with blockchain has obviously revolved around the data protection and privacy aspects um as i would say i become quite early and conscious of the internet monopoly that has influenced sort of um how services are delivered online and the negative impact that um and challenges of such centralized networks from a security and privacy perspective so i got interested in i mean how we can move away from heading towards a future of i would say vertically integrated stylus of data controlled by a few large players where our personal data are used um sometimes to manipulate or influence our online behavior so if i were to summarize my main interest with um in working with blockchain it is around this idea that each one of us needs a self-sovereign digital identity that is not dependable on any central authority and until blockchain we didn't we didn't have a technical groundwork um sovereignty okay very good yeah um you all have heard um the introduction into blockchain this is um you see also behind ninat our logo um this is the the topic that brings us all together um because um yeah there is obviously a big need to make a real progress in creating also the infrastructure not only the technology to be able to utilize this novel approach to or perhaps it's not so novel anymore but for us in healthcare it is quite novel because we have not really used it in to its full potential but because the healthcare environment and also the the development environment for new treatments whether this is now drugs or devices is particular sensitive because what we try to achieve here is we want to generate reliable information for the yeah for the development of new treatments for patients that is the ultimate goal and for that we need to enroll uh patients human beings into a test situation um this is approximately the worst thing that somebody can do and it went also horribly wrong in the past as you all know when you think about the third reich and nazi crimes so we are all extremely sensitive uh to make sure that whatever we do with patients in such a test situation is really done in a in not only an acceptable but in a perfectly acceptable way uh acceptable uh taking into consideration the the dignity and the self-responsibility and the right to self-responsibility for all patients under all circumstances and in all conditions we had a lot of discussions about the role of data in that of course ultimately we are generating data we are in need of data we have meanwhile also worked on on exploiting other available healthcare data in a more intelligent way so that we perhaps can over time reduce the number of patients that we have to expose to a test situation but that comes at the price that we need to define what data we can really utilize and under what conditions and i think that is where we have most of the the discussions also with patients and patient representatives yes we want to have new treatments yes we need to make sure that the date the treatment our relia treatments are reliable that means we need to be sure that the data are reliable and yes we do not want to be exposed to research as much as possible on the other hand if data are required we need to make sure that the data that that can be used for that are reliable and also of good quality on the other hand we need to make sure that we protect our privacy and our confidential and maintain the confidentiality of our health condition which is jeopardized otherwise we would not be patient so we have here a really vulnerable point in our life so we need to make sure that we find a good balance between providing the data that are required generating the data that are required but really doing this and the full protection of what is important for me personally as an individual so this balance benefit risk balance between rights of the individual and the rights of the and needs of the society or other patients at large that is the underlying um conflict that we have to deal with and where um it is extremely important that we create now also for blockchain an environment a governance infrastructure combined with the technical and ethical aspects that can do this in an optimal way and this farmer lecture project and that was the reason why we in efgcp were so keen to join and happy we were invited to join is to to contribute the viewpoints and the opinions uh from the ethical side and the scientific side and the healthcare professional side and especially also from the patient side but also especially patients who have experience in the medicines development methodologies and technologies to be uh and who are therefore really able to uh to provide very meaningful advice and and opinions uh to help us you um applicants so to say of the system uh to come up with good solutions and all of you here in the panel are in the one or other way also or in several ways involved in these discussions and trying to find the right balance so um what we want to discuss now is how pharma how blockchain and especially or enabled through our pharma ledger project will be able to um to help with that situation and to make blockchain a reliable safe very well-known approach to handling data personal data in a more sophisticated way that enables the optimal use of these data for the generation of new treatments now i think we cannot get into any discussion with everybody at the moment without thinking about covet and the covet pandemic and the situation in which we were all thrown since a year and all the changes and and new situations that we have been exposed to um this was on one hand um not so easy uh for the pharma ledger project because we could not meet anymore in the way as we wanted to but nevertheless this project and the team here was extremely active to nevertheless um develop all the deliverables in an imi project that were promised to be delivered according to the timelines so we do the work that needs to be done despite but um there is quite often the discussion okay if we had been five years further and farmer ledger would have been already um completed and everything would have been established and up and running some of the situations would have looked differently than they were now in this crazy year 2020 we were surprised by everything so my first question to the panel is what do you think if we were really five years or seven years further and blockchain would have been really already established in the way we foresee it and envision it in pharma ledger what would have been different um in in this pandemic and this period and this let's say a time of of unexpected problems and hurdles um and difficulties so who wants to start hernando would you like to sure so thank you um and i think it's important also for us to recognize that short of a world war right a pandemic has now become the other catalyst for for tremendous change yeah we've all been thrust now into uh from the business side and from the personal side i mean normally we would all be together up on a stage talking and but yet here we are virtually working because this pandemic has really put us into a difficult different precarious challenging situations um and i think what it's done for our business and for our processes as whole it's really push change to a level that we normally don't see right so if i bring into the world where i work from the medical side telemedicine has now become the normal right that is the thing if you want to see a doctor if you want to see a specialist the the uh the use of telemedicine right through a mobile device and uh reaching out to a patient at their home has become the standard now right and i'm sure that's going to snap back and we'll go back to some sense of what the world was ports pandemic but also from a trial side from a clinical trial side we now need to bring the trial to the patient right it's no longer a norm or should it be expected that the patient gets in their car drives a couple of kilometers has their procedures and goes back home we've now had to revamp all those models so one of the things that we're looking to do with the work at pharma ledger is also advance some of those technologies and i say that from the perspective of we went into this thinking we're going to do some good work and do some great research but the pandemic then happened and now we've been forced to do it at a faster pace and now the work that we're doing here has weight right it has relevance because it's no longer something that you're going to put on a shelf and research and be able to go back to and read it but now we're going to be able to take some of these solutions and move them forward and that's exciting right that's exciting for many different reasons one which is what i mentioned earlier the ability of patients to connect with the data yeah the ability for healthcare to actually be more focused patient-centric right and also for patients to understand that the data is safe right their data now has a better um guarantee if i will and i'll let my dad speak more to that later on a little more assurance that the data is actually safer and being used wisely and if if not then they can remove their use of this data and their healthcare systems but i think it's an important aspect also to recognize absolutely nina do you want to yes i completely agree with hernandez there is a lot of potential that could have been addressed uh had we had blockchain broadly adopted uh before the pandemic and since we're talking about privacy i think it's important to recognize one important lesson that we've learned from the pandemic in that context and that is that we don't trust the tech companies or our governments for example to use and store our personal data especially if we're talking about sensitive information like like health health data or or geolocation data and here i'm referring to the um contract tracing apps um which were which have i would say had sort of a mixed success worldwide uh you will remember they were introduced as a as a promising way to control the spread of the disease by tracking our movements and and exposure um but yeah we didn't see them playing uh playing a big role in controlling the disease because people weren't persuaded that those who were collecting or designing these ads were actually safeguarding the privacy despite the numerous pledges that we had coming from all sides that they offer anonymity and and the data are essentially stored on the on the user devices um if we take for example the eu and the us um i would say that contact tracing apps may have had been more successful in du and i don't have statistical insights in it so i may be speculating but from all the interactions and connections that i had from the people here in europe uh most of them or quite a few of them were using this we're using these apps and and all of these apps the national content tracing apps underwent the screening of the of the national data protection authorities which are the one the watchdogs of um of the gdpr this comprehensive piece of of uh data protection law that we have that we have in the eu it sets up sort of a bulwark i would say against the misuse of information um so this could have been one factor for the wider use of these apps in europe and and in the u.s and hernando may may say if i'm wrong here or not but there is no baseline privacy federal privacy law establishing enforceable privacy rules and studies i've read studies that have shown that these contact tracing apps were a major failure primarily because of privacy concerns which were listed as the key reasons the key reason or all they're not the only one i would say if you're not using these apps um and to your question would things have been different how we had already established blockchain based contact tracing apps um perhaps i don't know i mean the technology does offer uh or allow for for sharing of information while preserving the privacy of users and users can specifically choose which data that are significant for corona virus relief efforts to share while ensuring that their privacy and identity remain remain protected uh but i think everyone will agree here that trust isn't something that we can we can build overnight and uh definitely we can't expect from lock changes over all our problems and transparency is an important component in building this trust and i would say enabling transparency for information is one of the biggest promises of blockchain which provides a fully auditable and valid ledger of transactions and then this adds sort of a degree of accountability that may not have existed before yeah i think one of the clear disadvantages of the apps was that we are here in europe in different countries and the apps in the different countries do not speak to each other uh but the people are moving between different countries and i think that made things also quite difficult to to be efficient um so i think um it's also something which is probably so interesting or important for katrin to when we talk about standardization and systems talking to each other how relevant would you think um is is it that this works really in in the when we want to really progress blockchain in a meaningful way you are unmute er indeed uh thank you very much for this question this is extremely important to see the value of data and and looking back in the previous question about what would happen if we were five years advanced i think we would have a more elaborate trust ecosystem and and there is a point here that that that i think we need to understand about the trust ecosystem and blockchain and petrol is the fact that now the people involved invest a huge amount of time in data curation and preparation and that's because in part they don't trust the data yeah and they in quote all the data because it's data that they created so if we establish this ecosystem where there is a level playing field and where data are curated automatically because there are standards and because these standards are well adopted i think for instance hl7 fire think for instance the international patient summary for extracts of electronic health records that are meaningful then we would be at a different stage where building bridges between public health and care which is very much relevant in the kovit era would be easier it would be easier because there would be established standards that we can use without much effort and without thinking essentially this is my aspiration for five years ahead how blockchain fits in that space well i mean think of uh pharma ledger and the off of the change storage of of of data you would reconstruct the health data in a standard form automatically this is the vision five years ahead and this is how we we can envision a new space where there is higher data literacy there is higher data quality and data is well formed by design very good yeah anchor would you want to comment as well yes absolutely well i feel like we're living in a very exciting time because we have a convergence of different elements that make blockchain a very interesting topic today we have uh big players sitting at the same table finally working together on the blockchain project and this is something that's pushed by pharma ledger and all the people that are in this consortium we also have investments because for a very long time there were startups working on different projects we had the ico period and then funds were kind of lacking and blockchain projects were remaining at experimentation status and not evolving very much but now we have both the players and the investments and the third element that i feel like it's really important and this was brought by the pandemic is the public awareness about the sensitivity of personal data and health data which i feel like it wasn't really a topic before the pandemic some people were aware of the fact that you know there were bridges in hospitals and their health data is valuable and that they shouldn't expose it everywhere but some people were not and with the pandemic and the whole discussion around contact tracing that you were mentioning people began to understand the value of their health data and how much it can bring whether it is for a medical research but also to improve access to care and improve the health care pathway so we have these three elements coming together and blockchain is here to sort of link all these things together and have a technological solution to the problem of data of securing healthcare data but i feel like the technology can also can only solve the technical aspects of the problem and there are a lot of different aspects to healthcare data privacy that cannot be addressed by the technology and i think we have to be mindful of that that the technology can solve the technical part but then there's a lot of question about education how um how do you help patients understand uh the value of their data how do you educate them to protect their own data there are also questions about access to data and quality data which is not something that the technology can help with and there's also discussions about the security of data because because we have blockchain it doesn't mean that we have to forget about all the security measures and i feel like it's important to say that blockchain is here to bring more transparency and ensure the integrity of the information but there are a lot of different considerations that we also have to keep in mind to build a a whole solution that will address the big issue of data privacy i couldn't agree more with you i think we are riding at the moment at a on a white on a wave of public interest that we were always dreaming uh from uh concerning uh our activities uh to to inform the public about the way how new treatments are developed and there was absolutely no interest only when patients became sick or somebody in the family became sick they started some started to have a a certain level of interest but in one of the projects that efgcp was very much involved in this was the new party the european patients academy and therapeutic innovation that was also an imi project where we developed in a standard in a in a structured way uh capacity building of educated patients and we as at the beginning of this project we did the biggest survey in in europe on interest of patients and knowledge of patients about the medicines development process and what we found was really depressing depressing because uh not even ten percent of the population had this like had even heard or was even thinking about where their medicines came from and only three or four percent said that yes they have a relatively good idea how the medicines development process works nowadays i get daily phone calls from everywhere friends and family everybody around how does it work with these vaccines and why is it not that etc so we have a huge interest gain at the moment and we should really really also in pharma ledger benefit from that but mentioning farmer ledger i think the fact that this is an imi project a multi-stakeholder imi project we are not only working here on the on the technology and harmonizing the technology but also uh to provide to generate and work out the the governance infrastructure the the societal infrastructure the ethical infrastructure for an optimal use of of blockchain and that leads me very well i think to a first question that we have received here how do we ensure uh to establish global rules to comply with in terms of data privacy independently from the technology used as one of you want to start answering that question what can we do to ensure that we establish global rules to comply with in terms of data privacy i i think i i can start a little bit so i again this is my my viewpoint of the world um one of the things that we're doing within the ledger project itself is we're actually there's a dedicated work stream aimed at reaching out to a lot of the regulatory global regulatory bodies right so fda ema pmda um edb edc all these different organizations around the world to explain to them what we're doing and to try to get their buy-in but also feedback on the work that we're doing now that's not necessarily going to build standards but i think it's raising awareness that there is work being done here that could help and advance healthcare right so i think that's one step in the right direction to me this particular work this body of work with farmer ledger is is unique and different in that sense we're really making a very concerted effort to make sure that the work we're doing again back to my earlier point it's got weight we're now taking this forward and actually having those conversations there i say those intelligent conversations with the people that really can control and influence the way we move our projects forward yeah and i think it's also really helpful that we have these use cases with these practical examples where we can pilot uh concretely how how it can work and what the issues are because it's it's always very difficult for people to to stay in the purely theoretical environment i think as soon as we can come with concrete um examples um results uh data then it becomes much more understandable and also tangible for for people uh to to to think about it and to to open their mind to it and perhaps even enable the use of it and also if i can build on that um i was recently reading this study that was conducted in a hospital and patients were asked under which conditions they would share their personal health data and one of the patients answered well i don't care about data sharing i just want better care and i feel like this reflects the fact that patients today and just individuals in general in the society want a service or a product and if giving up their health data to get that service or product is worth it they will give up their health data this is why we all you know send messages on social media and post photos because what we gain from it is much higher than the price of you know giving up our health data or personal data and i feel like there's a balance there between knowing the value of your data and knowing what this data can help you achieve and then also what is given to you in exchange of this data and if you get better care if you get access to drugs faster for instance in rare diseases and things like that people will be willing to share their data and then it is down to people that work in healthcare to make sure that when patients give up their data for that better service the way that they give up their data is a safe and protected and secure way because they will give it up because of the better service and it's our job to make sure that they're doing the good conditions yeah i think you have um certainly a very important point here your spontaneous reaction to say we want better i i'm happy to give my data i want better care i could imagine some countries very easily where this answer came from but i can also imagine some countries where we would need to look quite intensively for somebody who would react like that being a german living in belgium i can tell you i i think i would really have a hard time in germany to to find broadly such an answer because people in germany are extremely concerned about their data privacy and protection and everything that can be done should be done must be done under all circumstances um i mean i they're there there are examples where i was really completely astonished um there are they are trying in germany to uh to come to um a common approach on getting children back to school and one of the the measures is that the children get twice per week tested self-test or do a self-test and there are in some regions in germany parents who are not allowing or who do not want that their children are supervised by teachers when they do the self-test in uh in school and not in the private environment so they do not get this measure through in germany at the moment because of that discussion because the outcome might be yes or no and that is not something that the parents absolutely would want to share with the rest of the class so i think coming back to uh to the the question on the global rules um so so far i think the the answer your answer was um if we demonstrate that it works and what the benefit is then there will be a trust increase and there will be less hesitations um but is there something that we can also do here to to really proactively come to a more joint agreement on what data privacy really means what is relevant uh to to share and what not because when we think about all type of data i mean all type of data versus uh health data and let's say the the vulnerability that people feel when it is about their health data i mean people are very generous about their data they they have the names of their babies on the car etc so there are lots of things that people are not worried about sharing but health data is particularly sensitive so um any idea and perhaps catherine from your global perspective is there anything that could be done here so a couple of points uh uh were inspired by by by your insights the first one is that we are living at a time of a profound cultural shift and this is partly due to the pandemic so sometimes rules and regulations underpin this cultural shift and you are right that there are differences in different countries so the rules will not come at the same speed but there is a general trend that we can identify however the most important element is something i i referred to earlier which is trust building this trust ecosystem and that's where blockchain and the work of pharma ledger across different lines is extremely important but there are more there are more elements that contribute to this culture shift i would like to mention for instance the work we do in a project called fair4health where we are trying to index health data that are private they are about care they are in a healthcare institution and we would like to use them for research so how do we make sure that we send the algorithm to the data rather than sending the data to the algorithm and how do we make that in a way that protects the privacy of the individuals so that's point one and and there the whole movement of fair data findable accessible and interoperable and reusable is is is out uh you know it's extremely important so think that right now libraries uh research libraries are thinking how to index not only books but also health data sets and then what kind of metadata do you use to actually index those data cells so that the data are of adequate quality and they are good for purpose so there is a duality here there is a duality of my data versus the data of us the community that can be used to be uh solve problems and without bothering you i would like to add a third element and that element has to do with mixing data that are public and open with data that are private so think for example um when you are trying to convey a con combined data about covid in general yeah and versus my movement my health data and and the whole discussion about the digital passports digital health passports which has uh received so much pushback so there is a value there which we are not able to um to capture because we are not ready for it but this is happening it's it's happening and i think uh use cases that like the use case of formal ledger uh would would help to make this shift accelerate this shift and of course kovit is is a key player too many too many things too many ideas thank you okay uh neenah would you like to to add here when you think about the global rules yeah when we talk about privacy around health data i would say we have to make a distinction whether we're talking about health information created by the health care professionals like electronic medical records lab test prescription whatever or health information which is generated by the patients themselves using apps wearables tracking devices which can not only reveal aspects of their physical or mental health but also their exact location at a certain point of time or their social behavior or interaction as we're seeing that more and more studies are showing that um health stats plus social connections combine offer a stronger picture of the patient's overall health and than either data cell alone so so i would say that i rather increase privacy concerns around this second group of user-generated health-related data coming from the mobile devices and consumer health depths as they're built outside the recognized medical and clinical settings and therefore they're avoiding essentially the heavy regulations and rules that would otherwise apply had they been implemented had they been intended to be used in in the healthcare sector and one important conclusion perhaps that we can draw from from this growing market of mobile apps um health apps is that patients and consumers and this goes to to anka's point um want at the end of the day want to be better informed about their health so we have to think about how we can bring this first group of data that sits in silos in hospitals uh in pharmacies research organizations closer to the patients so that we can draw conclusions and be better informed about our health and be be involved in the impact in our treatments uh and and this is what we're doing we're essentially trying to do um in pharma ledger as well setting up yeah i think that is um you raised a number of very important points that that would really need to be further discussed in detail um but i think one point that we have not yet discussed but that which you raised is um the difference of of the data there are data that patients share proactively and voluntarily because they are convinced they'll have understood that if they share this type of information then that may be helpful for them all the info the whole system uh to generate uh something important new for them i think the the big fear is for about the the hidden data the data generated by apps for example understanding where people are at the moment uh walking living uh what they are looking at um and and so these indirect data that are generated through our uh i.t systems and that are not fully under the control of the patient um and where there are people more or less um suspicious of in how far their ownership rights are respected so um could we could we help this is the the the development or the acceptance um in by by finding a solution through blockchain that makes it more transparent clearer and therefore can build more trust about what happens with these indirect data that are not under the direct control by the person but where others are using the data in a sophisticated way to come up with a type of of information that is of course also important but um the the individual person the patient cannot in any way decide whether this is important or not no but they it's given it's gone and it's out of their control so can blockchain help here to bring us back to our topic so ingrid let me let me just yeah i want advances but i also want to come back and make a make a point about something everybody is touched upon and that's the the level of um data literacy that we have right the lack thereof and so i'll give an example anka spoke about the the patient's wants and desires to just get better treatment do you think they would feel the same if they knew what their data is being used for or how their data has been how much money is being made on their data right and this is just from the app site so on a personal side my friends and family have no idea what happens to data when they like when they go on social media when they're doing all these things that data is monetized and it's being used against them to build more apps to separate them further from their money yeah on the health care side i'm collecting data and i'm so heavily regulated that i can't even move to catherine's point i can't bring the algorithm to the data right so we play by different rules if patients knew that the data were using is being used to develop life-saving right or life-improving therapies and drugs that would be a different story but it's not we get lumped into one big bucket right they're using that pharma company using my data and god knows what they're doing with it and they're just like google and we're not very different yeah um where i think pharma ledger is different unfortunately we're still being looked in the same way as we're now looking at data differently we are yet still heavily regulated but also now have more security and more provenance for the data right so patients inside the work that we do at pharma ledger have connection to their data now and we can guarantee it right something that you normally can't do but we can tell you what's happening to your data and if you want your data back or don't want to share your data you can do that we can now assure you that once you say you want to be forgotten from one of our use cases or trials it can happen now right google can't tell you that facebook can't tell you that but we're viewed in the same light so one of the key aspects for us is data literacy right and that whole sense of how the data is being used so in our use cases we speak specifically to educate patients on how the data is being used and how blockchain specifically this use of technology can really advance this space for us and try to separate us a little bit from the normal world where data is monetized and your likes become the next step that you see yeah yeah catherine and and this brings back uh one specific case uh use case so that pharmacist is actually sharing with another project i'm involved in gravitate health which is the leaflets the medicines leaflets and this is a topic that is very close to uh to our behavior so i always had this dream that i would go into a pharmacy i would have my medication list and my problem list and my allergies on my mobile and they would help me decide which over-the-counter medicine i would choose because it would be safer so think not only in general terms about data literacy but also about medicines literacy how it can be boosted if we move to the space where we can use productively data that are private my data my health data my problem list my allergies my medication list but also public data like the leaflet information and how we can develop the trust that is necessary to trust the information about the leaflets huh yeah that's where blockchain can make a difference really make a difference um i see here a question how can we differentiate between critical for example medical history and non-critical information for example the blood group can we do we need in with blockchain have to make a differentiation or is there a need that we are not fulfilling yet how to to deal with that critical or non-critical data i if i may say something on that i think they the key point is how you use the data the use case i mean you can use a knife to cut a throat or you can use a knife to prepare your food right it's the same thing with data yeah okay and but i think it's also a bit of of personal judgment on one hand um because for example when we think about blood groups if somebody is raises negative um that is healthy already more difficult to live with than if you are a blood group zero which a large portion of the population has so if anything happens to you you have a much better chance to get blood um from from somebody else than if you have a rare um blood group so i think also here we have to still differentiate in how far people feel vulnerable uh because of the of their health data or the data that they are sharing and also here we have differences what is important for people and what is not important for people so i think it's really really um a difficulty that we in in the future probably will have to work uh more sophisticatedly on figuring out how that can be more generalized and then to develop information improve the data and health literacy uh to make people aware where it's really critical and why and where it's not really critical um so there was a question to you catherine how can an algorithm come to the data uh i think i think this is a i i i threw a very a black and a blanket statement there is a technique there is technology that you can do but then you open a whole other set of questions like what kind of algorithms i would allow to run on my data uh in general terms there is a research area which is called the privacy preserving machine learning so where you are actually allowing machine learning algorithms even in the distributed environment to run um and and break out results preserving the um the anonymity of the data that arrive because you get only the result for example um you know typical um typical levels uh of a disease or you select the different questions like for instance in in fair for health one question that we are trying to answer is a 30-day readmission yeah so one way to solve this question is to send the data about admissions from a hospital to a central place along with data from other hospitals and answer the question the other way is to say give me the 30 day readmission rate and make sure that the data are in the shape that they can answer this question in the same way in spain and in italy and in switzerland that's one of the things that we are addressing in in the project called fair for health by verifying data okay any further comments on that i i think when we had a conversation earlier this group anchor brought up an interesting point to the catherines about the tokenization right so the tokenization of patient data this very new very different approach of how data is used is possibly an example of how the algorithm is brought to data right so data stays within the native systems but you're applying this technology that allows the data to be followed through its journey and then in this case the use of blockchain and tokenization allows the patient to say look i'm done i don't want this or i don't want health records maintained i want my data back or in some cases i want to make money off my data right anka so they can literally now have more control of their data and that's an example of where we're now applying let the data sit where it sits we'll bring the algorithm to it that's new that's not necessarily part of farmer ledger but i could easily see that that could become the next right point of point of interest yeah absolutely and one of the things that we talked about when we had this conversation was uh tokenization of the data and um having the data uh in a digital format be an nft and uh just have this idea that uh just as you own a token you can own your data and i think that this is um another conversation that is brought by blockchain is the fact that we sometimes say that with blockchain people will be able to own their data but i don't know if there's such a thing as owning your data first of all from a regulatory perspective i don't think that there's a lot of places where this is just not possible in france um your data is like your kidney you cannot own it it's part of your body but you cannot own it therefore you cannot monetize it but i know it's different different places in the world so i think we have to be careful with the words that we use because blockchain can give you more control over your data bring more transparency ensure the integrity of your data but i don't think that you can go as far as to say that blockchain and tokens will give you ownership of your data of your data okay yeah i think you the the key point that we that we seem to to need to um achieve is an improved trust level um in the in the in the handling of of data in general i mean this is it's a um it's a huge general topic a highly political topic uh in in europe we have the gdpr after many years of uh of discussions and still there is the the big concern that um there are commercial organizations who are able to uh to collect a lot of information without control of of the the generators of of these data on one hand and to um yeah to draw conclusions from this huge amount of data um that people would not want them to draw but um that they would want to see perhaps in a public environment develop and not in a commercial environment so um what would you think is um the the possibility of what are the options here really um and what should we communicate as a simple message to the public in how far blockchain can really improve their trust level uh that by agreeing to it we're using it um they they can really improve the situation for themselves and for the the public at large if i can share my view from from from the pharma ledger perspective uh here in pharmaledge we've created this this vision of open data sharing units uh with the with the main idea to have our data assets securely encrypted off ledger and only anchor it without with a cryptographic preference in the in the root blockchain to inherit these properties and the vision with opendsu is that the users the patients are in control of their confidential data via smart or digital wallets where we can manage data access and give consent um to data processes for the confidential data stored in these in our smartphones and in this way we're utilizing the characteristics of um of blockchain to interested aspects as as you mentioned in grid that are essential to increase trust in the system so we're basically having our digital identity stored in our digital wallets which collect and protect our biological medical whatever data throughout the day and we decide how we want to use any of these data as we're the sole owners of the encryption keys that can decrypt the information for for selected parties so all these pieces of information in our digital wallets come in a form of verifiable credentials and that are cryptographically shared between peers in the edges of the network so this way we can we can be in control of our of our of our personal information only not only health data okay yeah so i think um i i fully agree with you though the question is how can we convey that message um to to the public to make this really as a part of of the public current um general understanding um because i mean fears come always from feeling not knowing enough not being of being exposed to a situation that is not fully transparent so managing the fears by providing information that is relevant correct and understandable easily understandable is these are probably elements that are most suitable to to reduce fears i know that we have not much time left but i would like to go to a question that we have received from the audience um there is the question is which is the vision of pharma ledger with blockchain imagine you are in year 2030 how the panel c will happen when a patient arrives at a hospital what have been the advantages for a patient with the implementation of black blockchain in comparison with today so what will what will be available uh in the hospital and how will the data be used in comparison to today does it mean in simple things that they have to do less tests because the test results from everybody from from the whole last 10 years are now available and trends are clear or what will be the advantages i can share with you a vision that may or may not include pharma ledger i hope it does but i can share with you in 2030 what i would love to do is to be able to go to my doctor with my phone and provide my medical records and give my consent through my phone get in my car go down the street vote with my phone via the blockchain voting then go to the airport show my vaccination records and get on the plane with my phone and then also pay for a said airplane and travel with my phone through bitcoin um and then go to my final destination and order my room and do everything with my phone through the the advancements of blockchain so is that pharmaledge of course not at all that is a portion that is but i think we're starting to get to the point where we have create we can create a level of trust patients can trust from the perspective of pharma patients that their data is being safely stored and no longer used in malicious or malintent ways i think for us that's one of the best outcomes that pharmacology can produce okay any other answer for one of you i i would like to say also to answer to another question that was mentioned in relation to this vision of 2030 it was uh the question was about the ownership of data and the question whether we really can own our data and i think anka referred to the answer to that but what i would like to add is that the key is linked data how do we connect the data and where pharma ledger can connect the dots link the different kinds of data and bring the patient the person at the center of their health related data is the place where efforts like farmer ledger can make a difference i can connect the dots and then i can go as hernando said to my daughter and say here are my data from five ten different hospitals can you run an algorithm to tell me what are my prospects given my recent exams what are my risks what is the best treatment for me can i enroll in an advanced treatment and clinical trial these kinds of questions we cannot answer today but i hope with the trust ecosystem that allow us to link safely data from different sources we can make this happen okay very good i mean one thing that um is really also the basis here for everything is um the identity of the person uh we have this in in clinical trials um as a big important point for example when we do virtual informed consent which is something that that is getting more and more frequent especially in corona times the contact between the physician and the patient need to be reduced to the bare minimum so the information about the clinical trial can be done uh virtually the question is we need a signature from the patient that he has been properly informed and and consents to participation how can we ensure that this person who gives the in consent is really the person that afterwards will then also participate in the trial so i think here we have a couple of and i see now that we are getting interrupted soon in our discussion um but i think that is uh what i would like to use then also here as the last uh point so to say that there are still lots of details that we have to define uh where we need to find uh pragmatic solutions easy to understand solutions um that can help then ultimately to to raise the data literacy and the awareness of the benefits of sharing data in a certain way in a controlled way and to trust in blockchain technology so with this i think uh i would like to thank you very much for a very lively discussion thank you to the audience uh for your very interesting questions um and i think we are only at the start of this discussion not only this afternoon there will be many more discussions about that but also generally uh when we want to be sure that blockchain gets introduced into our daily life in a in a very comprehensive and intense way uh to make our life in 2030 better than it is today so thank you very much have a nice afternoon and evening thank you so much ingrid for preparing this beautiful panel with nana hernando catherine anka thank you so much for being here today and thank you to the audience it's been a very active chat thank you for that just to let them know we will have the following session in 20 30 seconds so those who want to be as engaged as now in the chat you just need to go to the schedule and click on the on the next session and then we'll keep the conversation there thank you so much once again and thank you to pharma ledger also for organizing the all those uh pharma related sessions that bring so much value to the discussion see you in a bit thank you very much