The following are the outputs of the captioning taken during an IGF virtual intervention. Although it is largely accurate, in some cases it may be incomplete or inaccurate due to inaudible passages or transcription errors. It is posted as an aid, but should not be treated as an authoritative record.
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>> We all live in a digital world. We all need it to be open and safe. We all want to trust.
>> And to be trusted.
>> We all despise control.
>> And desire freedom.
>> We are all united.
>> MATHEUS FALCAO: Hello, everyone. Greetings. Thank you so much for joining us today for our workshop session. We are very ‑‑ I'm honored to be moderating this session with our guests. We are discussing today a lot of issues concerning digital health and how to create an important link between right to health, and these new technologies in new ways to explore digital health.
So not taking very long I'm going to start with our first questions. We're going to work in three rounds in this workshop. The two questions that I'm going to share with our guests and then after round 4 questions for the audience. I would like to start with a single question.
Which change has COVID‑19 brought in terms of digital health at a national level in a very concrete perspective? I'm going to start to invite Anita Gurumurthy to answer this question. Anita
Anita Gurumurthy is a founding member and executive director of IT for Change, where Anita leads research on information society studies with a focus on governance, democracy and gender justice. She also directs ITfC's field resource centre that works with grassroots communities on technology for social change models. Anita recently completed a multi‑country research project on e‑government and gender equality in the Asia‑Pacific, in collaboration with the United Nations Economic and Social Commission for Asia and the Pacific.
Anita over to you. Thank you.
>> ANITA GURUMURTHY: Thanks so much. I think what are the changes that COVID‑19 has brought in terms of digital health at a national level, I think the world over, the pandemic changed the way in which Governments look at data and look at surveillance and citizens look at data and surveillance, which an important thing that is being written about is the dirth of data capacity. In my country we ‑‑ at the height of the pandemic access to the digitized information about the public health systems just a number of hospital beds, disease incidents that told all of this kind of information that have been invaluable to make decisions about how to ration hospital resources, testing facilities. All of this data was not available to policymakers. Lack of transparency as well. But the problem goes in to the back end data backbone, which is simply nonexistent. Instead we actually saw this predictable turn towards realtime geo located data and contact tracing, quarantine, monitoring, et cetera.
And this is actually problematic. There was 62 apps at one point launched by a host of agencies all uncoordinated. A lot of lasted resources. Some very good citizen led initiatives. And the Central Government's app that was collecting a lot of personal data and without any purpose limitation, without any boundedness was really a cause for great concern, alarm. But this was not just restricted to my country, I think. But it was also, for instance, this scholarship, media reports in the EU about the disproportionate surveillance, existing instruments and advisories and Guidelines, including the GDPR's guidance and how to use geo located data does not elaborate the proportionality, the limitations, right to privacy and contact tracing.
So what really has not received attention is how investment in public data infrastructure underpinning health systems can happen, especially in highly resource constrained environments. The policy debate has now shifted with great urgency, you know, with a massive, you know, imagination of the national health data ecosystem.
It's called the national digital health system. And intended to serve as the public infrastructure for public and private innovation to provide the essential Techno building blocks, that's the anonymized. So very, very solutionistic approach. And let me quickly end my input by saying that there are at least three to four significant shortfalls here that we should be alert to, lack of clarity on safeguards to ensure constant validity in the sharing of health records. How do you share health records. What is informed consent. Lack of safeguards for harms, incurring downstream data processing and this kind of solutionism. No mechanisms to prevent the capture of health data value in these public/private partnership which is supposed to rescue public health. The type of risks we have seen in big partnerships between the NHS and UK with big tech companies. And finally, among many other different problems the risks of exclusions that could arise in health services because the mandatoriness of the health I.D. which is programmed in to the national digital health infrastructure.
So the adoption of the health I.D. if it is tied together with citizen health records, then you have a situation where citizen medical histories are stored in a manner that becomes visible to the system, and also to insurance companies. So that creates a certain market for predatory data practices. And personal data protection law or nonregulatory system, it is really the devil in the deep sea predicament. I will stop here.
>> MATHEUS FALCAO: Thank you very much for your input. Now I'm going to follow with our next panelist. I'm going to ask Barbara the same question concerning national change at the pandemic on digital health.
So Barbara is a professor and Head of Department at the Department of Political Science at the University Vienna, where she also directs the Centre for the Study of Contemporary Solidarity and the interdisciplinary Research Platform “Governance of Digital Practices”. Her work explores the social, ethical, and regulatory dimensions of genetic and data‑driven practices and technologies in biomedicine and forensics. Barbara is currently a member of the National Bioethics Commission in Austria, and a member of the European Group on Ethics of Science and New Technologies advising the European Commission.
So Barbara, thank you very much. Over to you.
>> BARBARA PRAINSACK: Thank you very much, and building upon the great diagnosis that Anita has already presented, many of the aspects that Anita mentioned also feature in the Austrian health care system. The feature is specific in that, of course, it is a very primitive situation. It is a rich country. One of the highest performing health care systems. And also the most inclusive and prior to COVID it was surprisingly undigital. Almost everything was focused on personal face‑to‑face contact. For example, physicians, doctors did not ‑‑ could not do any consultations over the phone or over digital platforms because in order to get reimbursed they actually had to see the patients. Prescriptions were filled in person.
So it is a very interesting combination of a system in a highly technological country was health care system, especially at this interface of patients and the health care system was not digital at all. That has changed very rapidly during COVID. So telemedicine has received a push and a catalyst for different reimbursement rules. So nonface‑to‑face consultations can be reimbursed. Prescriptions can be filled digitally. There is however and also speaks to a topic that Anita already mentioned, there is a great hesitancy in Austria and great skepticism of sharing, making personal data available and a central storage and analysis of personal data. That level of skepticism is higher than in other comparable countries and the reasons for that is many fold.
And I think this plays out, first of all, in a number of people opting out of the electronic health records due to concerns of oversurveillance. And also it became pertinent during the COVID era, when it came to COVID contact tracing apps. So the idea or many people who did not download the apps, they didn't do so because they were concerned about the surveillance. And the point I want to end with here in this round is that these concerns are not necessarily concerns about individual privacy only. So very often when people voice those concerns, and they frame these concerns in terms of systemic societal aspects, so the question is much more what kind of society do we want to be and live in and not so much how can I protect my own data. The notion of public value where other people benefit, other patients benefit is crucially important. And I will stop here for now.
>> MATHEUS FALCAO: Thank you very much, Barbara, for that. Now I'm going to ask our next panelist, Junho Lee. He is a researcher at the Center for Health and Social Change, a non‑profit community based research centre specializing in transdisciplinary research on health issues. He is leading the project in critically analyzing digitalization of health in Korea.
>> JUNHO LEE: Thanks. Thanks Anita and Barbara for laying out the baseline for our discussion. I guess I will be discussing a little bit more narrowed or detailed examples of what's happening in Korea at the moment. In February 2021, Korea mainstream health launched a web app called My Health Way. The app is supposed to ‑‑ designed to establish the sovereignty of personal medical data. Currently providing medical checkup data and prescription data and vaccination history which is collected by national health insurance records. And by 2020 and 2023 they are hoping to collect all the medical health records in the EMR system regardless of public or private medical institution. And also collecting data from wearable medical devices and integrating in to a single app providing it to other institutions, patients and even to the private companies.
So this is not only providing patients with an integrated record. But it is also supposed to give full ownership of the health data given back to the patients is being argued. But what is notable is that Korea's plan for reintegrating data is encompassing the personal, financial and other information. My Health Way app is part of my data umbrella program happening in Korea. It was evident in the COVID‑19 pandemic the single registration system was quite effective in contact tracing which was highly priced in Korea for controlling the early outbreak. It also raised a significant concern over the privacy.
And recently passed law in disease control prevention act. Allows CDC to collect data on credit usage from banks and geo location information, from telephone companies and surveillance from the police for contact tracing purposes.
So this means that people would come in to contact with infected individuals could be traced and quarantined almost in realtime.
Assessment stage of the pandemic, the Ministry of Health made information on affected individuals public, including names and transportation and medical institutions they visited and health status which raised significant concerns over the privacy. But even though the names and addresses were not given out, details and personal information that was revealed was quite identifiable leading to discrimination and personal distress.
So these recent trends in Korea are conglomerating all the health data including administrative and financial data raises serious concerns. It does show how Government is viewing the health data in the times of COVID and how effective it can be for the control purposes or surveillance purposes at the time.
I'll stop here and I'll discuss a little bit more on the issues of ownership and other issues in a later stage.
>> MATHEUS FALCAO: Thank you very much. Now I'm going to ask Nicoletta to answer this question as well. So we're discussing what changes the COVID‑19 pandemic has brought in terms of digital health at a national level. So Nicoletta is a journalist and senior policy analyst in global health in development. She played an active role in the NSF campaign on access to essential medicines. She worked as a consultant of the World Health Organization and leads the global health program for society for international health.
>> NICOLETTA DENTICO: Thank you very much to all of you. Glad to be here. Now because we have only a few minutes, I will start by saying that whatever Barbara said for Austria can be simply applied to the Italian context. Because ‑‑ I mean her analysis of the situation of Austria, the concerns of the Austrian people, do very closely resemble the concerns, preoccupation that Italy ‑‑ Italian society also had from the very beginning when they set up this special contact tracing app.
Only 12% of the population actually, you know, downloaded it. And then it failed very, very soon because of mistrust, because we were looking at Korea, in fact, saying that we ‑‑ yeah, they may be effective but we don't want to go in to that direction.
And so for all the caveats of the app it did not convince people. Now notwithstanding all these conditions of very scarce literacy from on the side of the population, but also on the side of the health personnel, because there is a lot of training to be carried out. Now with national plan for recovery and resilience that has been agreed upon within the European Union, Italy which is ‑‑ I guess we can say the major beneficiary of this plan, will invest an enormous amount of money in to digitalization, especially for health, digitalization seeing a kind of panacea of the poor health infrastructures that we did have in the past, and actually digitalization being seen as the only approach, only strategy which can ensure tracing, contact surveillance and proximity.
The good thing, I mean the interesting thing that the plan, the national plan for recovery and resilience has carried out when it comes to health care is actually feeling all these narrative, very soon put in words talking about proximity, networks of proximity. This kind of how soft community, they no longer called hospitals.
Trying to semantically cajole people in to buying the new product for which a lot of money is going to be invested. And for which there is as I said a situation of departure which is rather difficult.
And an attitude of the population that has increased in hesitancy, precisely with all this kind of back stories. Digital hesitancy is combining itself with the back hesitancy that creates a lot of complications. Of course, there are and I finish, there are a lot of big question marks because Italy is divided in to 21 regions. And there will be 21 different systems. Interoperability is going to be a big problem. Lack of knowledge by the population. How do you convince an elderly population to get in to this. But this is really the scenario on which ‑‑ this seems to be a kind of discrepancy between what the government wants to do and what the society is ready to accept. I'll stop here. Thank you.
>> MATHEUS FALCAO: Thank you. I guess as we can see there are many common issues, different countries but common issues. And this probably which has moved the organizations that have proposed this workshop to bring this discussion. Important to remember this workshop was proposed by People's Health Movement, Society for International Development and IT for Change. A group of different society organizations to bring this important discussion. I would like to get back to you, our panelists and ask you after your valuable impacts, from your perspective what a global digital health framework for realizing right to health should include. If you could highlight some key message on that that would be really important. I will follow in the same order. Anita, if you could start.
>> ANITA GURUMURTHY: Thank you very much. I'll keep it short. I think it just shows that there is a lot of room to not just discuss this, but really launch some kind of a voice of conscience in terms of the framing of the issue at a global level from this perspective that the panelists bring it. I want to point out that in addition to the social value of privacy and what kind of society we want in terms of how data may be alienable or not. There is some literature. But we do need to understand the concerns as data to a public good and what that would mean in terms of value for equitable and universal health care that, you know, the wealth of knowledge that is locked in data can be put to.
So there are two questions of value. One is the value question from the point of view of privacy and the other social benefit, public benefit. I think there is individual, there is the collective and there is the system.
And broadly I see five overarching principles but there will be several and there are several ways to cut it. And these I speak from my position of relative ignorance. We need to protect data rights of individuals in the community of health. And this includes a change of civic liberties and data, across the data lifecycle, including the right to know what use my data is put to which will include informed consent and more in downstream users.
The second principle I think and I stick to the data part of digital rights, global digital rights, the second is deepening the ability of health data systems to deliver equitable health. The third principle would be to achieve just distribution of health data value. So not this kind of products and services spin, but a constitutional rights spin which is that science and innovation, basically users of data and AI should be not based only on market inputers, such as climate for personalized medicine, wellness, perpetual youth and all of those things but public health imperatives.
The fourth is to really understand and recognize the collective control of people over their data, including the need for Democratic deliberation around the nature next. I want to point to a few developments that have been taking place. The recently launched report calls for a new approach to collection and use of health data. It prioritizes protecting individual rights, promoting public good and potential of data and building a culture of data. But I think to break this down in terms of the individual, the collective, the system, and what equity and justice means in terms of data value. Transform health which is also something that people in this panel may be familiar with, is this global initiative which works in a coalition towards universal health coverage around the SDGs.
And this initiative recently released its draft health data governance principle. And to cite from the document they mention front and center that the concept of data ownership which is ‑‑ which implies that individuals and communities have a right to know, to determine and to control how the data is used. And to benefit equitably from such data. And such rights extend to products and services the right from data and AI and health data systems and their governance therefore should be designed based on such data rights and ownership.
I think a very significant development in the past couple of months which is important for the public health movement, People's Health Movement community is the WHO's health data governance health. It is the rhetoric is beautiful. And we need to see how the Member States and the world community will actually walk the talk. And what this health data governance Summit outcome document underlines is the need for cooperation and dialogue to secure health data for and as a global public good. And aligns support for identified good practices and principles in health data governance. I quote, establishing health data as a global public good, adhering to international standards and governed by good practices will help build trust to maximize harms and strengthen individuals and communities to have control over and benefit from their own health data. And it also underlines the role of health data stewardship and accountability mechanisms. It checks all the boxes.
And therefore I think here the caution is two‑fold. And I would like to point out those cautionary frameworks when these principles are debated, deliberated and raised in terms of what actually happens on the ground.
I think we need to take a leave on going the digital ‑‑ the genomic sequences. And genome sequences they are not meaning to conflate the two at all. We will do well to remember the differences but there is one important thing which is this climate or open access, right? The open access framework has become extremely fashionable, especially in the genomic sequences during this particular pandemic. Also before in the SARS context. But suffice to say that no sequence that has been taken out of Africa has helped the African people ever. Something is failing.
And, you know, many times this is motivated by the need for credit and academic, you know, scientific communities and to strengthen and embolden the big Pharma.
The second thing that we have to take out of what happened with the genome and Nagoya Protocol, they are not seen as one time benefits and monetary benefits, but intangible long‑term society benefits rooted in ideals of equity and justice. I will stop here. Thank you very much.
>> MATHEUS FALCAO: Thank you. Very important impacts. Let me also take this opportunity to thank who is sending questions in the chat. We will try to get back to it in the final session. And I welcome you all to send your questions and inputs in the chat. Following our workshop for you, Barbara, the same question, what a digital health global framework for realize the right to health should include.
>> BARBARA PRAINSACK: I'm going to start answering the question by emphasizing that the empirical data from many countries all over the world and here I'm referring to the study led by Ana Middleton in Cambridge that includes many countries. And tens of thousands of participants who are asked how they want their data to be used. The empirical data shows that people aren't generally worried about data sharing or digital technologies but they ‑‑ as Anita and Nicoletta and others have emphasized, it is important for people to have a sense of control and I would say that both individual and also collective control is important. And it creates value.
So Anita already mentioned the right to know what my data are being used for. This doesn't need to be necessarily an individual where people are asked every step of the way, you know, on a sort of weekly basis should we use this for this. Use it for that. But it is more Barbara called it consent to being governed. So if they are trustworthy governance frameworks, other people trust will make good decisions on their behalf and then collective governance and control could be very good. Collective control is one of my key points that I think should definitely be part of such a framework. So strong institutions and mechanisms for collective responsibility oversight.
So but another important point that was already mentioned is collective control over what the data are used for. And that's the key thing. So what many people are ‑‑ and I think very often rightly concerned about is that their data could be used to limit access to services for people, to profile people outside of the stratification that has clinical benefits for patients. So that data in a way are used as Anita was saying for to meet market goals or profit goals against the interest of people.
And this is why the collective control also over what data are used for are so important. Similarly nudging, so very often and we have seen this happen in the COVID pandemic as well, that data and information are used to nudge people to make good decisions. And this is very often something that people don't want the data to be used for. But what would be a good way of using such data. It would be obviously highly needed and we've seen some comments in the chat to that effect already, to save lives, to improve the health of people.
Also to improve, you know, in a noncrisis situation or beyond the crisis situation to improve services in an equity way. So if we use data to know where particular health needs are very prevalent, where particularly health problems are particularly prevalent, then I think this is a very good use of data beyond the clinical use in the strict sense of the word. There are also ‑‑ there is also value in using data to support health in all policies. So I think COVID has really driven home that almost every policy field is health policy. Housing. Environmental policy. Social Policy. Tax policy. All of that is in a way also health policy. So to use data to help us decrease social and economic inequities and inequalities and to abolish poverty would be the best way to prepare ourselves for the next pandemic.
The root cause of much of the suffering beyond the immediate effect of the virus is poverty and inequality. It is not a far‑ fetched thing to say that this is what health data should be used. And in this way if they are used in this way, if people see it used in this way there is also very often trust. A similar thing applies to ownership. Many people rightly warn of too much emphasis on ownership in connection with data. I think what we would need to ‑‑ we need to place a caveat to that concern. Namely, that ownership discussion shouldn't focus on individual ownership but I think we really need collective public ownership, not only of data, but also of infrastructure, the platforms, software and so on.
So I don't think we want or at least I would not consider it desirable to have highly digitized and digitalized health care system where a lot of the infrastructures are owned by entities that have no public accountability and whose prime concern is not to increase public value.
So I think such an alliance for an international using digital infrastructures and data in an alliance to globally improve health care for people and also to think about a right to health care should always see data in the service of other and digital instruments and tools in the service of other greater goods.
And as I said earlier, I think the key thing will be to also establish very good instruments with, to improve collective oversight, collective control and also and this is my last point, collective harm mitigation because data use will have a great benefits. We've seen that in the pandemic but there will always be some harms incurred. At the moment even with the forms of redress that many legal systems pose nowadays with the protections that frameworks such as GDPR pose there will always be harms that can be occurred without anyone breaking the law, without anyone's nefarious intentions. And I think a society that posits it as a matter of solidarity for people to share their data needs to have better strategies in place.
If anyone is harmed by data use the owners cannot be on them to prove what exactly happened and what caused the harm. We need to have low threshold mechanisms there to support people if they incur ‑‑ if they experience such harm.
So it is about collective ‑‑ the rights, collective control, collective oversight and also protecting the interests of people and societies.
>> MATHEUS FALCAO: Perfect. Thank you so much for this very valuable contribution. Now I'm moving to Junho. The same question. From your perspective, what the global framework for digital health should include in order to realize right to health.
>> JUNHO LEE: Thanks, Anita and Barbara, again for providing an excellent blueprint. But I guess mine will be more of a question rather than the answers.
There is a saying in Korea that we need a "new normal" in a post‑pandemic world. But as I have shown in an earlier case in Korea it seems like we are going back to older normal in this time of the crisis. And sure the COVID has a huge impact in the digitalization of health.
And as Barbara and Anita mentioned I think the question of digitalization of health boils down to the who owns it and how it should be governed. In case of Korea, as I have shown in My Health Way, it has a mixed response from the public. As you can imagine integration of a huge amount of data raises a lot of concerns about confidentiality, privacy and the misuse of data. But the Government said that to avoid a criticism over such issues that they say that My Health Way only acts as a platform and highway to transform the health data and they do not really store any personal records or personal data in the servers or in the system. And despite their reassurance the Government position is that they only act as the highway and transferring the data rather than taking responsibility of such data and how it should be governed.
It really sounds like easy escape from the criticism and also individualizing the risk rather than socializing it. So it does really raise the questions on what kind of ‑‑ who owns this platform and how it should be governed.
And to complicate the matter a bit more, there is a mixed feeling in general public consumers welcomes these changes and each person has the control and ownership of the health data and sharing of such information between the medical institution and insurance company. In this case the private insurance company will really enhance the accessibility and choice of the patient, the customers.
This is the argument that has been raised by the customer groups. But on the other hand, the patient group, especially who has a chronic disease, cancers, they argue the simple story emerging of health data doesn't really provide or guarantee the autonomy of the patient. As you can imagine health records are conflict dataset and giving information, giving informed consent for access to specific uses may be difficult to understand and implement in the level of the patient's understanding. And furthermore, there are currently no effective measures or sanctions in place for misuse in secondary uses.
The Government emphasized the data in My Health Way is not for commercial use, large hospitals, insurance companies or even the data mining companies. Later stage in the app they can ‑‑ a patient can download all their data and there is no really safeguard for how they are used in secondary usage.
And the issue is further entangled by the current legal structure in Korea of the patient data. Although fundamental rights and ownership of the patient data is within the individuals, individual patients, but patient records are produced by hospital. And it is really treated as some kind of intellectual property of the doctors and hospitals. Because of the ‑‑ and duty of the safeguard and storage of the records are within the medical institution.
And the nature of the health data as public good as already mentioned showed that there are really multiple network interest which devised a simple solution of how this data is owned and governed. The sensitivity of health data, especially when it merged with identifiable data, poses a risk of privacy. The app doesn't hand over the ownership of data without a safeguard is essential at this stage and should not be achieved through the technological means but by the transparent Governments.
Without it there is ‑‑ without this there is a real risk that My Health will cause real harm and offset the benefit it might bring.
So integration of the personal data has gained great momentum during the COVID‑19 pandemic. There is a sense of urgency to see the deregulation and people's participation was developed before the pandemic era. It was rapid response to the crisis. There is an urge and push for the speed for this kind of information to be moved.
So, for example, My Health Way was on the way since 2018 but most of this development was made during the COVID‑19 pandemic. So close development allows little room for discussion for its development and during all this stage of development and app development, the Committee did not include any patient group or Civil Society representatives. And it was only 2021 that during implementation stage of the app when they launched the app, there is one patient representative in the committee where other 15 was from either from Government or from the industry.
So I think this really shows the impact of COVID‑19, sense of urgency or unprecedentedness that reverse in the Government structure we struggle to put in place in the previous time. And there is real return to the old normal in times of new normal in the COVID‑19 world. I will stop here. Thanks.
>> MATHEUS FALCAO: Thank you very much. Very important contributions as well. And now over to you, Nicoletta, for the same questions.
>> NICOLETTA DENTICO: Thank you. I will build on the last port of Junho's intervention and thanking Junho, Barbara and Anita for their extremely good insight and blueprints for the global framework we would like to see.
I would like to really depart from Junho's points because I think this is really the building block of any framework that we need to build together.
And I think ‑‑ I'm also very concerned that, you know, the sense of ‑‑ this kind of emergency regime that has now been surrounding the digitalization drive, I tried to explain earlier on the amount of money, the narrative that is supporting digitalization as the solution to most of our problems, if you are not digitalized you are not ‑‑ this kind of almost idealistic sense of innovation that cost whatever that, and whatever the outcome is and whatever the process behind this innovation is to me that most worrying element. And we have not even in Civil Society Organizations have we discussed and dived in what the right to health means in a digitalized era.
We are only now thanks to COVID or due to COVID are we starting to minimally grasp in a concrete manner beta through ourselves or the first societal debates, the reactions of our society is what this entails and what it should entail by the way because as Junho was saying Civil Society Organizations are not really involved in this, are they? Digitalization as Parminder always says is the most multi‑stakeholder process that was born in a multi‑stakeholder era. And does entail the role of the private sector with no kind of rules of the game at all.
So this is really I think the preliminary conversation that we should ‑‑ I think Anita called it a voice of conscience early on. That we really need to raise in a very constructive but determined manner. Because otherwise in this emergency regime it will not be possible shortly to do anything. That I think is a major concern.
I'm also saying ‑‑ I mean on top of the things that you have said and some of which would be a repetition from my side I would like to raise this ‑‑ the urgency of this discussion and this topic. Because as you know the WHO is discussing the Pandemic Treaty now. And the Pandemic Treaty, whatever ‑‑ final outcome, but the original narrative that actually has triggered the Pandemic Treaty along in one year, a very speedy negotiation is this idea of sharing, sharing data, sharing pathogens and everything ‑‑ I mean if you look at the documents has got to be done quickly, rapidly, and it has this acceleration culture in it.
Which, you know, who is monitoring this acceleration and driving this acceleration when the Pandemic Treaty is actually constructed along of all society approach which when we say that, entails intrinsically the role of the private sector. And hardly any Civil Society entities that are present in the scene. So I think we really need to be extremely ‑‑ we really need to bring the digitalization discourse out of the pandemic discourse, out of the pandemic reasoning. And try as Civil Society Organizations I think to raise more and more the conversation on this very important and delicate issues in societies with the health personnel.
Even health personnel are sometimes polarized in between ignorance and resistance because of ignorance. And this kind of drive that's financially supported and therefore they see themselves that unless and until they enter this world they will be penalized, not go with their careers, that is the only way forward.
And honestly I think COVID tells us the future of health care and the right to health in a comprehensive manner.
So I think this is a really ‑‑ a major issue then. I think we need to consider something that applies to products and to medicines. Who owns and who controls the intellectual property of an algorithm. If we now have problems and issues with the IP of something that's trackable, a drug, a vaccine or whatever, how can we track the origins and the property and the intellectual ownership of an algorithm. This is something that we need to address very, very seriously. Finally, I would imagine that any framework has to really set a very philosophical as well as technical analysis of biotechnologies.
I think, you know, no one is doubting the role that technology like crisper can have in servicing the right to health, according to the criteria that both Anita and Barbara have designed, that I totally share. However, I think a serious discourse, philosophical is cultural and the political discourse of the use of the biotechnologies for temptations that are very strongly supported financially by research and innovation in the interest of market and in the interest of, you know, speculations around the right to health, have to consider the use of biotechnologies, what type of technologies that we want to, you know, promote, favor and what is the collective ownership and control and information around these technologies. Because at the end of the day if we take the constitution of the WHO health is also knowledge and scientific monitoring and enough instruments to be able to be part of the discussion. And be part of the decision‑making process. I would stop here. Thank you.
>> MATHEUS FALCAO: Thank you for your very important impact. So there is a lot to discuss as you can see here. Very unfortunately we are almost running out of time. I'm going to start this final round with by thanking the people who made us questions and comments in the chat. Very important. And I was trying to extract two issues to hear from you. So first the participation of users of health consistent associations of patients and communities in the digitalization process. If we get back to the ‑‑ we have community participation as a key component of right to health. If you are thinking of right to health, this is an important matter. So I would like to maybe hear from you on that as well. Also a very important question here concerning literacy and access to Internet. Let me share with you this week in Brazil there was research that showed that about half of the population in Brazil cannot access Government programs because they don't have full access to Internet because of a bad connection or because of issues concerning literacy in Internet.
So maybe I would like to hear from you on that as well. Do feel free to share your final considerations. Let me just finish this final intervention by thanking you all for this amazing workshop, our panelists and everyone that's following here at the Zoom call or at Youtube. And thank you, IGF, for the organization.
So over to you Anita, please for your final considerations.
>> ANITA GURUMURTHY: Thanks so much. I just want to make two points. Maybe speak to a second issue. I think both are very different false binaries. And I will take less than a minute. The first is often in a context like India activists have repeatedly said that it is pretty rich to think about the data when the basic health infrastructure is binary. That's really a false binary. We will simply miss the bus if we don't do something now. That's a very different context from the Developed World. This entire thing has left so many people dead, that activists are rightly pointing to maybe what they think are elitist issues about the war against data privatization. So we need to cross that bridge.
The second I think is a very provacative but important point about which is the theme for another deliberation on intellectual property. I think that the problem will be solved if we invert the paradigm and say rather than opening up public data we do need to open up private data. So the binary that some data can be open and accessible for innovation and other data can be closed and appropriatized for Intellectual Property, that binary doesn't hold. There has to be a baseline of data, belong which baseline which is that line that you can't collect certain kinds of sensitive data. But above that should be a line that's available to everyone. Whether public, private innovation, that line doesn't really belong to anybody in the sense of perpetual profiteering.
>> MATHEUS FALCAO: Thank you.
>> BARBARA PRAINSACK: I couldn't agree more. So I think this is very, very important to point out this binary, this false dichotomy between caring about basic health needs and caring about digital infrastructures. In many countries the universal basic services movements now include information and communication technologies. So I thank you, Anita, for highlighting that.
At the same time I would like to as a social scientist take a look in to why this binary emerged in the first place. It did emerge, this false impression of a binary emerged because of the way in which digitized and automated solutions are promoted as an alternative to what I call high touch medicine. There lies a danger in the sense that if we ‑‑ if we move in a direction of trying to ‑‑ if we accepted health care systems have only a finite amount of resources and the resources are becoming scarce which I think we should not accept by the way. If we are serious that health is the highest good, then, of course, we will find money to pay for it that we don't use for other things.
So if health care systems follow the cost imperative, then there will be a very small margin of elites that will be able to afford human medicine, where they still have contact to a human practitioner and other parts of the population will have to do with automated medicine, where symptoms are tracked, diagnosed online and automated where digital technologies replace the face to face type of medicine that's so valuable.
And I think also in the spirit of Anita's call, which I fully agree, we need to say that digital technologies need to be in the service of making available face‑to‑face, high touch medicine, facilitating high touch medicine. The expensive stuff is not the data. It is the human interpretation and the human care. So we must make sure that digital medicine does not become a replacement of human medicine.
>> MATHEUS FALCAO: Thank you very much, Barbara. Junho.
>> JUNHO LEE: Yes. Just briefly following up on participation, I think we have to be aware of, be careful with the black boxing the technological issues. And I think as Korea has shown that often Government or companies exploiting the technological issues and labeling the committee as the technological issue committee and Civil Society, the patient group often approved by the technological issues is too complex for them to participate. And the issue is with the experience and how the Governments should be managed. So I think opening a black box of the technological issues and don't be put off by it should be an issue with participation from the Civil Society and the peoples.
>> MATHEUS FALCAO: Thank you. Nicoletta, please.
>> NICOLETTA DENTICO: Very final consideration, let's avoid not only as Barbara was saying that digital health becomes, you know, the main strategy, substituting the face‑to‑face health care that we consider very valuable but also let's have a digitalization, help a new centralization of health. Let's look at health as it is and not just medicine. We need to look at digitalization. When we consider human health and animal health and planetary health, one embracing factor. This is the only way in which I can see that we avoided extreme hypervigilization of health. We can gain some ground. Because really COVID has done a lot of harm to, you know, to the world. But it has also brought so many new categories that we need. Absolutely we need to redesign the future of health and the future of global health justice. So I think the digitalization can serve the purpose very much. And we need to use it fully and be aware out of any binary dichotomy that we have a wonderful opportunity to do this. Thank you.
>> MATHEUS FALCAO: Thank you. So with that we end our workshop. Thank you very much. And thanks IGF for the opportunity.
>> Thank you all.
>> Thank you, everyone.
>> Thank you.
>> Thank you.