Committee on Public Health Ordinary meeting
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SANT European Parliament
Follow its sittingsStine Bosse
Thank you so much, Mr. Caceres. And now on to Maria Elena Nevado del Campo from the EPP.
Elena Nevado del Campo
Thank you so much. I'm speaking Spanish too. Firstly,
Our group will be working with complete loyalty to our patients, because that is what they're asking for. Public consultation that we held last year in this committee on rare diseases confirmed that patients have been waiting for years and have been asking for a European framework that's integrated for rare diseases. And that would make sure that there is a harmonization between the national plans as well as between governance and clear coordination of the European reference networks as well as national public health systems. We don't want siloed systems.
The interpreters, they want it a little slower.
Elena Nevado del Campo
What we need is a coherent strategy, and that is why we will be working with the rapporteur. The first obstacle that we're seeing is that there is a late diagnostic. Then there are inequalities, which continue to persist in various treatments, whether that's generalized or specialized care. We definitely need more research. We need there to be a clear push.
There needs to be clear funding. And of course, we believe that without data, there is no evidence. And without evidence, there are no treatments. For that reason, we will continue to work with the rapporteur. I think that we can reach a positive agreement and make sure that this is legally and technically viable, because this regulation would be very helpful.
It needs to be if it exists, but there needs to be a clear strategy which gives patients security and safety.
Marie-Luce Brasier-Clain
Thank you very much, chair. Thank you very much to the rapporteur for their balanced work. Rare diseases require a European cooperation given the very small samples that we have for most of the diseases. Eighty-five percent of rare diseases are actually ultrarare diseases with a prevalence under one in one million people. Having a profitable business for this, medicine is essential.
However, without that, laboratories are not investing, so we need public support. That is why we particularly support the proposals relating to economic incentives and innovative models, for example, payment based on performance or risk sharing. There are also issues in terms of the methodology of clinical trials because in rare diseases, the efficacy rate of treatment is, of course, lower than in the clinical trials, the classic clinical trials. There, we share the will of the rapporteur to improve the proof and change the rules. Often, the main issue is funding.
There needs to be better cooperation between member states to make up for the lack of research and investment, mainly by bringing more funding into the European network and raising awareness about the current initiatives. States also need to make more efforts to reduce disparities that exist between countries when it comes to access to health care. We would also want to emphasize regulatory access for markets, for selling on markets, public funding for research to reduce dependency of the classic economic models, fighting against the administrative complexity, preserving the role of states, and better collaboration between the current scientific networks.
Stine Bosse
Thank you so much. I don't see anybody from the ECR. Then on to colleague Kelleher from Renew.
Billy Kelleher
Thank you very much, chair. Firstly, I want to thank the repertoire and their team for the very progressive report, most of which I and my renewed colleagues believe is an excellent starting point, and we do look forward to working to its conclusion. I think there is genuine understanding and enthusiasm among the rapporteur and the shadows to move the issue of rare diseases along. Now, chair, when I say along, I want to be very clear. I mean, we know we are at the cusp of actually doing something in terms of legislation.
So I really hope that we move beyond the talking phase and into actual action with regards to the issue of rare diseases. For me, it really is about supporting families, the individuals with rare diseases, their families, carers, and the wider support networks, but we do actually have to do something tangible that benefits their lives. Firstly, I want to agree with the rapport on the need for a regulation and not a directive. I mean, again, we have a situation where we talk about deepening the single market. When you talk about making, you know, decisions more efficient, more effective.
If we have a situation where we have, you know, 27 national competent authorities overseeing rare diseases, and on top of that, a European directive that's encouraging national authorities, well, then very quickly, we would have a very disparate, fragmented, disjointed ecosystem, which needs to be, you know, very focused on the issue of rare diseases. So I hope that we can push for the concept of a regulation. Health care is a national competence, as I said, but rare disease action plan, as the repertoire refers to in their explanatory statement, is an excellent example of European solidarity where we all work together to reduce the disparities in terms of care between citizens irrespective of where they live and in the union itself. Central to what I will table as amendments next week.
Will down a little bit, Billy.
Billy Kelleher
My apologies. Thank you. Central, it's the excitement of this is the issue, so I'm about it. Central to what I will table as amendments next week will be the issue of newborn screening in the first instance, and expansion of genomic sequencing. While, of course, screenings of these natures in the first instance give clarity to families about what is happening to their children by simply giving a name to a condition and a diagnosis, it does much more in a broader sense.
If we screen for more rare diseases, we build up a population profile that gives pharmaceutical companies, researchers, and health policymakers and planners the confidence to invest in research and innovation in the knowledge that a suitable population base is ready and waiting, and needing medicine or a therapy for treatment. Another area I believe we need to dive more deeply into is the issue of engagement. But to my mind, it is given that patients and their families need to be involved fully. It isn't always the case. We know anecdotally that people living with rare diseases and the people who care for them are sometimes more expert in terms of the disease itself than their primary physicians.
So we do have to do an awful lot in terms of educating and informing and collaborating with cold-faced clinicians in the context of rare diseases. Equally, the pharmaceutical companies must have and be involved as well. And I know there's sometimes ideological views on this issue, but I really implore people not to, you know, take away the one entity that has the capacity to deliver medicines, and that is the pharmaceutical sector themselves. So I very much hope that there will be broad engagement with the stakeholders and understanding of their critical central need in terms of research, innovation, and development of therapies and treatments, and I really look forward to working with that. Just finally, references made to the data compilations.
Certainly, this is a major issue where we have, you know, no clear data on rare diseases across the entirety of the European Union. So coupled with my view, longer term newborn screening, and in the immediate term, you know, bringing all our data points together across the European Union to build up a population profile of patients with rare diseases. So I look forward to working with you, and thank you very much.
Stine Bosse
Thank you very much, Mr. Keller. Now we go to, and I will not give the floor back to the rapporteur before the end, but Margarita de la Pisa from PFE. Thank you.
Margarita de la Pisa Carrión
Thank you very much, Chair. Thank you. I'd like to congratulate the rapporteur on the report. I think it's a clear and well-structured report, and our group has worked on amendments that, with the shadow rapporteur, could complement your report because I think we mostly share your reports. We can agree that rare diseases affect a few patients per country, so it means that we need to have cooperation at the EU level to improve knowledge and treatment.
We support the importance of early treatment, early diagnostic like other speakers, but we also think that we need to highlight early detection. That doesn't always mean that there are treatments, but there need to be multidisciplinary staff who can help all of the patient with all of the different needs that they might have, so specialized programs, support, or even positive, good nutrition that could help the patient to improve their condition. We also need to make sure that we bear in mind things that can improve the quality of life. Sometimes there are small things that can make a huge difference in the lives of patients. Now sometimes the treatments don't always cure, but it improves the quality of life.
We think that the pharmaceutical package can lead to improved conditions for orphan medicines, and initiatives like biotech, which will be presented in the next point, can also push forward innovation. There needs to be legal security and incentives and support so that we can further develop this research on orphan diseases. It's also important that any diagnostics and treatments reach the patients, because often they take a long time to get to market. Finally, we need cooperation between member states and sharing of good practices, always respecting competences of the member states. Thank you.
Stine Bosse
Thank you very much. And now I give the floor to myself as a renew member. Look, I have two things that I think, and I agree with everything that has been said. I think it is always very rewarding to be in this committee because we always find common ground easily. And that is actually a good thing, especially in this area.
So I think what was said very clearly by my colleague, Kelleher, was the fact that we have to understand the critical situation that our pharmaceutical sector is in. We will debate it later in connection with the Biotech Act, but that is actually something that we should really all be worried about, especially for these areas where we all know that it is difficult. It is small populations. It is difficult to find the funding. And we all know that it needs public money behind it if we want it to grow and to actually exist as a solution for our rare diseases area.
So I think it is really important that we all pay attention to what will happen and can happen when we get to the Biotech Act, where we can really do something again, as we did with the pharma package, where we did get some of the way for the rare diseases area in better protection for IP rights. Second, on the data and the screening, it is so obvious that it just makes a lot of sense where there are 30 million people when we look at it across Europe. And it is only rare if we look at it country by country. We need to get this going. And it is so important that we put our feet where our talk is, and we actually get this done.
And then finally, and that is an appeal to all of us, really, to have the conversation with our nations and to make our nations understand that to cling on to the fact that this is only national competence is silly. Because when you talk with the hospitals, when you talk with the regions, everybody understands. We need to work together on this. So we have as parliamentarians, in my opinion, a huge task to make sure that our nations understand that in this area, it is undecent not to let go and not to work closer together. So that was my intervention here.
And then I want to give the floor if there are no comments from members, then I want to give the floor two minutes to the commission, represented today by Donata Meroni, head of health and monitoring and cooperation, health networks unit, Digi Santé, for four minutes.
Speaker 11
Chair, honorable members, the commission would like to thank the committee on public health and the rapporteur for the comprehensive work undertaken in preparing this report. We are closely following the European Parliament's work on rare diseases and improving the lives of patients and families affected by this condition across the Union. Rare diseases represent a major public health challenge. Addressing this challenge requires coordinated action at European level, bringing together member states, health care professionals, researchers, industry and patients organizations. Therefore, ensuring timely diagnosis, equitable access to expertise and treatment, and strong research and data infrastructure remains a key priority for the European Union.
In this respect, many of the objectives set out in the report reflect well the Commission's current policy priorities. Our work on rare diseases is underpinned by a strong EU legal framework based in particular on the Commission Communication on Rare Diseases, the Council Recommendation and Action in the Field of Rare Diseases, the revised EU pharmaceutical legislation, and the cross-border health care directive. We agree on the importance of strong coordination at the European level to improve diagnosis, treatment, and care for people living with rare diseases. Several ongoing initiatives are already contributing to the objectives highlighted in the report, and other action will follow. I would like to start with the 24 European reference networks, which are a truly European success story.
They bring together knowledge of health care providers, clinicians, and patients' organizations from across Europe, leveraging the collective expertise for patient care. The European Reference Network is a prime example of European solidarity, allowing the expertise to travel rather than patients, ensuring that patients receive optimum care that might otherwise be inaccessible in their own countries. Today, the primary challenge is that the potential of European reference networks is not fully realized because they are not yet well integrated into national health care systems. We have, therefore, launched the joint action, Jardin, with member states for integrating this network into national healthcare systems. The joint action also helped member states develop national plans for rare diseases and develop patient pathways, allowing patients to reach the high-level expertise provided by the RN centers.
We are also working to improve access to safe, more effective, and affordable treatments. The new EU pharmaceutical legislation promotes the development of treatments for rare diseases by making approval pathways for medicine more adaptive to scientific and technological progress, especially for ultra-rare diseases. It introduces concepts like platform technologies and breakthrough therapies for rare diseases without treatment options, which will receive 11 years of market exclusivity. The new pharmaceutical legislation includes new tools to support the launch of innovative medicines in more Member States. The proposed Critical Medicine Act will also provide voluntary collaborative procurement tools, allowing Member States to purchase medicine of common interest such as orphan medicines and advanced therapy medicinal products together, subject to certain conditions.
Moreover, the health and origin assessment improved the availability of health innovations, such as medicine and certain medical devices. Looking more widely, having a more competitive pharmaceutical, biotech and medical device sector will also support action on rare diseases. The biotech act will enable innovation across the single market, reducing the application and helping small biotech companies scale up. For rare disease patients, this innovation could meet treatment needs for genetic, autoimmune, neuromuscular, and metabolic diseases. Not to mention the impact of the European health data space on research, which will be transformative for rare diseases.
The European Health Data Space will draw on the work of the European platform on rare diseases registration to address the issue of fragmentation of rare diseases patients' data across Europe. Another major area of action is research. The Commission has supported research on rare diseases with more than €5,000,000,000 during the past 25 years. Horizon Europe continues to support collaborative projects aiming to improve diagnosis, developing new therapies, and strengthening research infrastructures. In September 2024, we have launched a new seven-year research partnership co-funded by Member States and beyond, the European Rare Diseases Research Alliance, Heredera, for delivering new treatments and better diagnosis for people living with a rare disease.
Moreover, many collaborative research projects tackle the development of therapies for newborn screening and clinical trials in rare and ultra rare diseases. In conclusion, we believe it is important to acknowledge the many ongoing and upcoming actions at EU level on rare diseases. At the same time, the Commission will also reflect on how the issues raised in this report could inform possible future policy developments, and contribute to the continued evolution of the European rare disease framework. We look forward to continuing our close cooperation with the parliament, member states and all relevant stakeholders, health professionals, researchers, industry, patients' organization to improve the diagnosis, treatment and care of people living with rare diseases across Europe to ensure that no one is left behind, no one is left alone. Thank you.
Stine Bosse
Thank you very much, Donata Marrone. And now I will give the floor back to the Raboteur, please, to you for your final comments. You have plenty of time. So.
Nicolás González Casares
Thank you, President, and thank you to all colleagues and the Commission. I think that all the ideas I have here are welcome. I think that they are very valuable and should be taken into account. We cannot create, like, a Christmas tree, but for sure, we are going to collaborate in order to integrate all the good ideas that some of you mentioned. And right, president, this is not a national interest.
This is a European one. I mean, rare diseases affect all 27 member states, but sometimes it's a short number of people in one country, and we need strong collaboration. Thirty more than 30 million people with rare disease live across Europe. There are a lot of Europeans. They deserve hope.
Sometimes they don't find hope. For all these newborns that are underdiagnosed, for all these families, we had to do something. We had to provide them with this hope. And I think that they spend years sometimes waiting for a diagnosis, going from doctor to doctor. We need also that feel this respect also for our institution.
I recognize the role of the European institutions. It's true that the legislative initiative comes from the commission, but the commission has said a lot of things. And it's clear that we need strong rules for Europe. You said a lot of things that should be integrated into the European regulation. We know that the initiative is yours, but please listen to us.
We are claiming for a strong voice, for unity, to give rare diseases people a response. Let's create a strong proposal, colleagues, that nobody can refuse. We should do something on rare diseases, and I think the moment is now. Thank you.
Stine Bosse
Thank you very much, and thank you for a good debate or discussion. So I also want to announce the deadline for tabling amendments, and that is set to March 26 at noon. So now we continue to the next topic on our agenda. Time-wise, we are a little ahead, but that's only good. So we have time to exchange views.
And this is in our series of exchanging views. And here, we have our guests.
Hello.
Stine Bosse
And this is in the series Excellence in Health Sciences. And by developing this series of exchange of views, we wanted to put more focus on science and innovation in health. And for this purpose, we are inviting representatives of excellence in health science. As you remember, we already had three exchanges of use in this series, and we are continuing today on the STORE study on the exposome, if that's right. Exposome.
One year after, progress and perspectives. I welcome today Professor Roel Warmohlen, distinguished university professor at Utrecht University, and lead author of the STOVA study on the exposome. Professor Vermeilen also leads the International Human Exposome Network and is co-chair of the Global Exposome Forum, making him one of the global authorities in this rapidly emerging field. I will give the floor to the professor for his introductory statement, and after to the members for a Q and A session. As usual, our discussion is based on catch the eye, and all members have two minutes of speaking time.
If you want to take the floor, raise your hand during the intervention, so that the Secretariat can take note. I will now give the floor to our distinguished guest, Professor Vermerlen, for eight minutes. But take ten if you want.
Speaker 12
Thank you very much. Thank you very much. Thank you very much, chair, for the opportunity to present today to this committee. It's a real pleasure and an honor to be here also on behalf of the Europe Exposome Forum, a group of scientists working on this topic and also on the Exposome Alliance, a cross sectoral collaboration also with the European Parliament. What I'm talking about today here is actually that there is a recognition that Europe is managing disease more than we are trying to prevent it.
If we look at the current evidence, then science would actually indicate that many of our chronic diseases actually have an origin in the environment. And with the word environment, I mean where we live, where we work, what we eat, what we breathe. Together, these different elements we call the exposome. And that's really driving health in Europe. Science would also, at this moment, indicate that only half of those factors that are driving these diseases are known to us.
And this severely limits our opportunity to really combat the rising problems that we see with chronic diseases in the population. So there's a clear need to increase our knowledge, but there's a clear need to increase and make the science to policy interface stronger. I don't have to convince you here that chronic diseases have a very large impact, also economically, on the European population. But it's important to stress that it also has a very large influence on the quality of life of European citizens. It's also important to recognize that when we look at the science to policy that we regulate our different factors, may that be work or in the environment or what we eat, by single exposures, where in reality, we all live in a very complex world where things actually come together.
That might be our socioeconomic position. That might be what we are exposed to in the environment. That's why we need a paradigm shift in the science-to-policy interface. This is what is in the STOA report, where we articulate that going from one exposure or one stressor to one disease is not going to be enough to actually combat the issues that we actually have now and that we will have in the future. And that is basically because the process will be too slow to keep up with the very dynamic changes that we have when we think about the chemicals that we are exposed to, but also the urban areas that we have, and the changes that we have in our food systems.
It also means that we underappreciate the combination of these different stressors. We know that there is an interaction between socioeconomic position and vulnerability to other stressors that we may have in our lives. We know that there are interactions between different chemicals as we have basically also in the PFAS debate and other debates. What is also important to recognize is that from a scientific perspective, we sometimes really do not know what the different stressors will be, and how they actually interact on the biology. And that's really where we have to increase our scientific evidence.
We articulated in the STOA report seven areas. We call them the seven Cs, where this actually could be a very useful and interactive design to policy interface. We can think about the chemical regulations. We can think about climate, child health, which was discussed earlier here. We can think about career when we think about what we are exposed to at work.
We can think about clinical practice where we know that medication has an interaction with nutrition, with other factors that we actually are exposed to. It actually enables citizens to have more control over their environment and gives them actionable information to change aspects of their environment and behavior. It helps cities in new city planning to build newer and healthier neighborhoods, which are essential because that's where the key of many of the health policies can be. In the report, and I'm not going to read this out, we actually articulate very clearly where these interfaces are and what can be done. What we recommended in the STOA report is that we need to scale up the exposome research infrastructure to actually be able to deliver this information to policy, to have more effective policies to really combat the rising burden of chronic diseases.
We also need to make sure that we link environmental data more clearly to the environment of the European Health Data Space. European health data space is a very good step forward. But we need to make sure that we link in the contextual information to the health records if we really want to make a change in prevention. And that's also where we have to embed prevention much more into health policies. Many of the policies and missions are still very much disease focused, but we don't have a real prevention pillar that goes across all these aspects, goes across all these different policies that we have. Think also about the new Bauhaus, where we don't have health as a very distinct pillar in the policy.
It is also that to actually have this information, we need to bank on the information that we already have, and that is by having large data sets to actually be able to study this, and that would help to have this information. And that's where we argued for funding a large pending European longitudinal cohort, which built already on national efforts that are going on in France, Germany, and other countries. The progress a year after the report, which I'm very happy that was well received both by the committee and the parliament, is that we have been able to launch the Exposome Alliance, a cross-sectorial, cross-party alliance between scientists, the parliament and NGOs to really see how we actually can make a change and make change in policy and the impact on the European population. We have been able to strengthen the research infrastructure by continuous support for the SREE infrastructure, Irene, on exposome research. The cross-party MAP coalition has been formed that goes across the different parties in the European Parliament.
And we have been describing how a potential mission or moonshot on the exposome could actually look. What is still needed and what we actually are bringing forward today and are happy to discuss is that at this moment, there is no budget line for exposome research, a broader idea of holistically looking at the drivers of health in Europe, to make sure that we actually have a healthy and competitive population in Europe. There is no European exposome data space yet. In the discussion of the European health data space, contextual data at this moment is not core and needs to be core in the discussion. Yet there is no common prevention pillar at this moment that actually goes across all the policies.
We really need to give a system to health in all policies. And there is no exposome moonshot mission yet articulated in the plans. That this is not just an articulation of importance. It's also shown here that we actually have the data currently and the science today already to act. What I show you here in this slide is a combination of the impact of air pollution and the lack of green space in Europe calculated on a neighborhood level, but here represented as cities, where we actually can indicate which are the cities that are at the highest risk or lowest risk of the combined exposures.
It shows clearly, if we look at the impact that urban form really matters, how we build our cities both in the physical sense but also in the political fabric and the social fabric, is really key to having a very healthy population. We can also see that evidence here geographically, that there is inequality in the impact of these exposures. You can clearly see here that in the right red box, we can see that Central and Southern European cities are more frequent than we have on the left side. But within these cities, we have large differences. I come from the city of Utrecht where we have a 12 year difference in healthy living years between one neighborhood versus the others.
This is really determined by socioeconomic position. We can already measure this. We know these things. We can bring this together, and we can bring this to market. We can bring this into policy.
So what we are asking for is to consider and ask support from the Santee committee, and you all here, is to think about how can we move this forward. For us, that's basically thinking about a human expert on a moonshot or mission to bring this forward. It is by thinking how can we actually bring this contextual data together with the electronic health records to actually make the European health data space richer, more applicable also for prevention. And it is to actually think about how can we now finally come to a EU common prevention pillar, really thinking shifting the focus from disease to actually the health of the European population. That's not only for well-being, that's not only for quality of life, but it's also for giving people the opportunity to partake in society and therefore also have a competitive population in Europe.
The targets that we set for 2040 is to reduce the burden of chronic diseases by 20 percent, but also reducing the sick leave of the working population. If we can do that with one day, which sounds really minimal, that actually has an annual productivity gain of EUR 55,000,000. So this is not an investment that has no return. It has a huge return, and it is important to actually keep the competitiveness of Europe. I show you here the people that are currently really spearheading this from both the European Parliament with Christophe Plageau here, and also Telemetz and the scientists here from different member states that are really pushing this forward.
We believe that science to policy is important. We are not here to lobby for more science. We are lobbying here to actually strengthen the science-to-policy interface. That's why there is an invitation for everybody here to join the Expedition Alliance, a cross-party, cross-sector coalition to put prevention in the heart of EU policy. We're here to answer your questions.
And thank you for the intention and for taking a little more time.
Stine Bosse
No. It's definitely our pleasure to listen to your wise words. And now the floor is open for just a second. Yes. First of all, Clergo?
Yes, please.
Christophe Clergeau
Thank you, Mr. Vermeerlin, for being here and sharing these inputs. Perhaps it would be useful for you to come back to the difference between the classical approach of determinants of health or one health approach, because I think everybody here knows what are determinants of one health approach. And what in which perspective Exposome is really a game changer? Is it a continuity improvement or really a disruption of the approach?
This is my first question. And the second one is about the cocktail and cumulative effect of the Exposome. Does it bring to a totally different approach of small dose of pollution of product? Because what we understand, what we listen to you is that even small dose can combine with other factors to have a huge effect on health and bring to new NCDs. Thank you.
Speaker 12
Thank you very much for these questions. I'm gonna try to answer the first question first and then, move to the second question. The first question, I always, as a scientist, I'm careful to call something disruptive. So, but it is a game changer. What we are talking about here is that when we talk about social determinants of health, we have studied that by focusing on the social domain itself.
When we think about my background on environmental factors, we have focused only on environmental factors, trying to understand that. The reality is that these exposures occur together. And let me make a little bit of a segue where the big game changer in genomics was when we actually were able to broadly scan the whole genome and understand how different genes that we thought biologically had nothing to do together actually interacted on disease. That was the game changer, why we actually made a big change. The same is true for the environment, that we have to understand how perhaps disparate policy domains actually interact and actually determine the health of the population.
And that's really the game-changer. That's the change that we actually go across all these domains, which classically has not been done. One Health is one of those steps that we are taking together at this moment to basically appreciate that the health of humans is not only depending on what we are exposed to, but also the ecosystems that we actually depend on. And again, exposome research is important there. Let me take an example.
If we think about plastics that actually interact with the ecosystems, reduce biodiversity, but that actually then reduce the potential, the quality of food to the human population. And so these are all things where we know that these things are interactive, and that's why we really need to look at that as a combination. Your second question was about the interaction effects. There we have clear examples. Two years ago, there was a groundbreaking paper in science that actually showed that when we look at neurotoxicity in regard to child health, if we actually look compound by compound, we could not explain the effect towards neurotoxicity.
However, if you looked at the total complex, we actually saw that chemicals that in itself do not do anything, but in combination with another one, actually are neurotoxic. If we actually do it one by one, the chemical that does not do something in itself would have been termed safe, which it is not if it actually occurs in combination with others. So these cumulative effects are real. They are there. These interactions are real, and they are there.
And they actually extend across the different domains, not only chemical to chemical, but also chemical to social vulnerability. And that's really what we need to understand, because without that full understanding, there cannot be effective prevention.
Margarita de la Pisa Carrión
Thank you very much, chair. Thank you. I'm going to be speaking Spanish. And as you've said, professor, there are many causes underpinning diseases: environmental, genomic, genetic, and it's very difficult to investigate and find the drivers behind a disease and how they interlink. So many things happen on a daily basis: what we touch, what we breathe, what we eat, and they don't affect all of us equally.
And such investigations are very expensive. It would be like running a clinical trial, but without there being an end product that will guarantee a return on investment. As such, therefore, we are going to need public funding because on many occasions, we are faced with diseases that cause fear because we don't know what causes them. Is it what we're cooking with? Is it what we're eating?
Is it what we're breathing? And that means that we do need to be able to investigate without creating stress at the same time. We need to increase our knowledge and give citizens the solutions they need, the knowledge we have with fact-verified conclusions. So that's what we're moving towards, because otherwise, citizens feel afraid, they feel insecure, they panic, particularly if they think they have a predisposition and have no idea what to do about it. And as I said, unlike clinical trials, you don't necessarily have an end product that will give a return on investment.
So we know that there's a zero-risk option, don't move. But that means basically giving up on life, and people have to be able to live. Now someone may think, okay, well, if I move, that would work. But what if you haven't got the money to move house? How do you come up with a solution for that situation when things are affecting your health, but you don't actually have the money to be able to do anything to change it?
Thank you.
Billy Kelleher
Thank you very much, and thank you for the presentation. Just briefly, I suppose we were speaking earlier about rare diseases and the need for data collection, to ensure that we have a profile of the population. And I suppose with that in mind, from the perspective of chronic diseases and disease in general and looking at it through the regional disparities of Europe, environmental factors, ecosystems, you know, everything that, you know, people interact with on a daily basis. I mean, how much data do we actually have available to identify potential trends, to identify risk factors in certain areas, in certain cohorts, in the population? You know, you said you've done research on it, but, I mean, was that research done on the data that is there through official channels, or was it you had to go out and find the evidence yourself?
So, you know, we have a situation in Europe where it's quite disparate in terms of policymaking and data collection as well. So if you could just maybe elaborate on where you believe we could improve that. And further to that then as well, of course, the whole issue of the capacity of computing and AI to, you know, assess lots of data to see, can we identify trends, potential risks on population basis or geographical areas or because of specific sectors? I just instance, for example, I mean, is there any way that data has been identified in the context of risk for farmers that would have been, you know, involved in chemical, you know, before we get tightened restrictions, things like that. Can we delve into that type of detail to assess potential risks and trends?
Stine Bosse
And then finally, I'll give the floor to myself. First of all, thank you very much for this study. It's a rare thing that we actually see studies that try to sort of capture the whole human being and our well-being. So thank you very much for that. Normally, we're sliced into small pieces, and then nobody ends up understanding the complexity.
So thank you very much for this. A couple of questions, and they also echo some of the things that have been said already. But how do you picture the problem from what when we see the total picture and the risk areas, and to then be more specific and guiding. Because I do also think what was also mentioned earlier by Margarita de la Pisa is that we also risk that people are so scared that they just freeze. And they think, you know, I might as well smoke and live in a polluted city and have a lot of coffee and whatever, because I don't really know how to navigate.
So the communication part of this. Second, I would like to see, you know, it's good to see that many of us are backing this, but I also would like to see a lot of this information filtered into some of the other areas that we talk in this parliament. It's not popular at the moment to say that, you know, chemicals might be dangerous, pollution is not good, we have to look at citizens' protection and so on. That's not in at the moment. It's difficult subjects.
And I appreciate that we have so many other agenda points: security, competitiveness, and all this. But how do we get your studies into the knowledge room that we need to look after, when we also take care of other policy areas? That would be my question. And that ends, I think. And then I give the floor back to you, professor.
Speaker 12
Thank you very much for these very insightful questions, and I will try to go through them as they were asked. Just to come back to the first one that, yes, I mean, health and the drivers of health are complex, and that's exactly why we bring this report forward, that we have to embrace that complexity. Ignoring that, complexity is not going to take us forward. So we have to embrace that complexity and try to fully understand it so that we can actually have effective policy. I want to answer a little bit on the return on investment.
Actually, when we look historically at the regulation that we took, if we think about the air quality guidelines, when we think about removing lead from gasoline, these are examples from my field. We see that there is a clear return on investment. Every euro that was spent basically had a gain of about €6 to €8 in return. So the same as I articulated for the fact that if we can reduce one sick leave day for the working population in Europe, that actually gives us a very large return. So I would push back hard on the fact that these aspects do not have a return. They have a large return.
And I also think that just from a health quality point of view, this is what we need to do. I do see that these interactions are there, and we need to understand them. We need to understand the vulnerabilities. And you emphasized a very important one where we see that socioeconomic position and other exposures actually do interact, and that's exactly what we are addressing. We see that, that's happening, but we then need to see how we can actually make that into an effective policy.
So I subscribe to that point. The point that was made on data is exactly the point that we make on that there needs to be a dedicated exposome data space that links to the European health data space. Data is disparate in Europe. And we do not always have that together to answer these very important questions about geographical spread, about differences in populations. In our research that we do, we sometimes can use data from official committees, commissions, and agencies in Europe that we can actually use in that research.
But most of it is actually now brought together by the research community to harmonize across Europe, to have these insights. What I showed you, the comparison between these different cities, is based on a European project that I led via the Horizon program, where we were able to actually, for the whole EU 27, standardize all the information about air pollution, noise, green space, built environments and so on to actually make that effective towards policy. That's also what I try to argue, that there is already a lot of data in the agencies, but also in the scientific community, that we actually are not now using effectively towards policy. However, to make the next step in that, that's where we argue for the data infrastructure, but also the cohort that is more standardized and harmonized across Europe. We do have different health studies in all of our EU 27 countries, some larger, some smaller.
But the problem is that the data collections, the data standards, the information we have in those different data sets are not equal. And therefore, answering these questions that are hugely important for you to actually understand where the largest problems are, how do they occur, and what might be the solutions, are, therefore, sometimes very difficult to answer. So that's our plea why we actually need that infrastructure to be done. The question that came back twice is on the risk of freezing people or chilling effect that information leads to, that we get worried and are not able to move. This is a difficult one.
But I think it all starts from the fact that we first need to understand before communicating. But sometimes, we also need to understand that scientific uncertainty is not the same as uncertainty and actionability. In general, we know which directions to take, and that might mean that we do not know everything, but we can already do things. To give an example, if we think about urban form, we do have good ideas about what makes a more healthy neighborhood, how we actually can improve social interactions in the neighborhood, how we can actually set up community informal care within neighborhoods. Those ideas are there.
What we need to do is implement them, evaluate them to actually understand how effective they are, so that we then can move that into the next urban development. That's also where that links to the question on the use of AI and data science. We have been able now to actually make digital twins of cities, of neighborhoods where we can experiment with our interventions to see what is actually the impact, who benefits, when and where. Does it increase social inequality? Does it reduce social inequalities, the measures that we take?
That has been facilitated by actually doing AI and building these digital twins. Similarly, when we think about chemical risk assessment with the AI tools and big data, we are now able better to predict the potential impact and their mixer effects. So data science and AI play an important role in this aspect. I think Europe is leading at this moment in this kind of efforts. And so when we think about sovereignty, when we think about our competitiveness, I think this is where we actually can invest.
And to come back then full circle to the beginning question, I do think that even from a public health standpoint, it is investable, but it's also investable for industry in the private sector. There are many that actually are working in urban development and urban planning, investors that do want to make more healthy neighborhoods. But the current regulation might actually hamper some of that, and we do not support that enough to make that change. So again, I would come back full circle that I think this is a very investable proposition, and frankly, that we should.
Stine Bosse
Thank you very much. We all know money talks. So hopefully, we can find the inspiration in the report. I'm sure we can. And we want to thank you very much, Professor Vermeulen, for joining us here today.
Very inspirational. Thank you so much. Now we will break until 11:00, where we will rejoin together with the ETR committee and meet our Commissioner, Vaheli. So, see you then.
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