Committee on Public Health Ordinary meeting
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SANT European Parliament
Follow its sittingsIs it good?
28 colleagues.
Catarina Martins
28 colleagues. More. Is that it? Let's see. We should have more than 28.
Stine Bosse
I hear, well, we have 23, generally. Okay. We regard it as done. Okay? So then we start with compromise number one, and it is by a roll call.
Right? No. It's not a roll call. It's not a roll call. It is shown by hand.
Stine Bosse
No. Adopted. Adopted. Then we go to compromise number 2. In favor.
And I ask those in favor to raise their hands. Those against and abstentions adopted. Adopted. Compromise number 10. Those in favor?
Speaker 4
Those against? Adopted. And abstentions? No. Adopted.
We go to compromise number 3. In favor. Against. Abstentions are adopted. Compromise number five in favor.
Against, abstentions, adopted. Compromise number seven in favor, against? Abstentions? Adopted. Then we go to compromise number 8.
In favor? Against? Abstentions? Adopted. And then we go to compromise, sorry.
Speaker 4
Abstentions are adopted. Compromise 12. In favor? Against. Abstentions are adopted.
Stine Bosse
Compromise number four. In favor? Against. Abstentions? Adopted.
Compromise number six. No. Compromise. It's a lot. Yeah. Compromise number six in favor, against abstentions. Adopted.
Compromise number nine. Favor? Against? Abstentions? Adopted.
Compromise number 13. Compromise number 13 in favor? Against? Abstentions? Adopted.
Amendment no. 35. In favor? Against? Abstentions? You want to check it?
So we didn't check.
Stine Bosse
A first time. That's right. Okay. Thank you very much, ladies and gentlemen. So we will move to this one.
Speaker 12
Give me a minute. Some people, I give you two minutes if somebody wants to leave the room. See you next week. Okay, ladies and gentlemen, let's get on. Our next point on the agenda is the consideration of the draft opinion on the so-called NRP fund.
Stine Bosse
I will give the floor to the Sainte Rapporteur for his presentation of the draft opinion, then to the saint shadow rapporteur, and finally, to any member who wishes to take the floor based on Catch the Eye. If you want to take the floor, raise your hand so that the secretariat can take note. So first of all, Mister Negresco, you have the floor for four minutes to present your draft opinion. Please, ladies and gentlemen, we have rejoined the meeting. Mister Nagresko.
Victor Negrescu
Thank you, chair, colleagues. I present today this draft opinion of the public health committee on the proposal establishing the European Fund for Economic, Social, and Territorial Cohesion, Agriculture, and Rural Development, Fisheries, and maritime prosperity and security for the period 2028, 2034. Our main message is simple. A strong Europe needs a healthy Europe. Health is not a secondary issue.
It is a condition for economic development, social cohesion, resilience, and the proper functioning of our democratic societies. If we want a union that is competitive, fair, and prepared for future crises, then health must be visible, operational, and properly financed.
Can you?
please slow down.
With COVID.
Little slower.
Victor Negrescu
Chair, you're very nice to interrupt me, but no problem. Then I will not be reading. It's easier. Not for everyone. So dear colleagues, the public health committee initially didn't wanna send an opinion, and I fought to get an opinion.
Because if we do not have a strong opinion of this public health committee, health will not be considered as a relevant topic in this important file. So we fought for it. I'm really happy that all the political groups accepted this proposal that they've made, and now we have to draft a strong opinion to make sure that health will remain a relevant topic in these future plans. Therefore, we also need to define what we want from this program, how we wanna finance health, give the possibility to finance health infrastructure, give the possibility to member states to organize specific chapters dedicated to health, but also ask for proper funding for health. So I'm coming up with this suggestion that I hope you will support, that at least 4% of the future plans will be allocated to health-related actions.
This means infrastructure. It means, for instance, to deal with store shortages when it comes to staff or access to medicines. This means to invest at the local levels. This means to invest in research, whatever countries would consider necessary. But we have to continue to invest in health while using this specific program.
So I'm referring, of course, to the treaties. I'm referring to the legal basis. I'm referring to the possibility to do cross border cooperation. I'm referring to all the health emergencies that we often talk about in this specific committee. But we have to draft a strong opinion.
So, of course, all of you are going to likely come up with amendments. But at the end, I will try to build a consensual approach that will show that we strongly believe that health must be treated as a strategic investment in the years to come. And in this regard, the upcoming national plans will be relevant for us to show that Europe together with member states are capable of doing more when it comes to health. Thank you.
Stine Bosse
Thank you so much. So, I give now the floor for two minutes to the shadow reporters. First of all, Sergio Humberto. No present. No one present from the EPP.
Miss, Mister. Mister. No? For the No? Okay.
Issia? Picaro? No? Go. Does he want to take the floor or not?
Vlad Vasile-Voiculescu
So I'll speak. I'll start by thanking the rapporteur for his work on this opinion. We are discussing a framework that will shape Europe's priority for years to come, and we continue to treat health as a secondary concern in our investment strategy here, sometimes. And, as if we continue to treat health as such, we're building our future on weak foundations. Across Europe, health systems are obviously under pressure.
Everybody can feel that. Aging populations, too few health care workers, and regions where access to care is becoming the exception rather than the rule. People feel this in waiting times, in unequal access, and in widening life expectancy gaps between member states. At the same time, we allocated less than 4% of funding to health in the previous national plans. I'm talking about European funding.
And that is not a technical detail. That is obviously a political choice, and that is a wrong one. Health is not a cost. It is a condition for everything else we want to achieve: economic resilience, social cohesion, trust in our institutions. So, yes, we need a more structured approach, not necessarily more words, more opinions, but definitely more clarity, more accountability, and visibility for health in the plans with concrete priorities, measurable targets, and funding that matches the challenges.
And if we're serious about resilience, we should also integrate innovation properly, and I'm primarily talking about artificial intelligence, to support health systems, improve efficiency, and help address workforce shortages. Robots might help. What we have now at our hands is artificial intelligence already there, already ready to be used. We should also be honest about the inequalities between regions. This is not about harmonizing health care systems, but about ensuring European funding actually helps people access care wherever they live.
We have a lot to do, and so we've been talking here in the subcommittee about the cancer plan. We're now talking about the cardiovascular plan and various instruments that need to be taken seriously and that need to be adapted to today's world and today's innovation. Thank you.
Stine Bosse
Thank you very much. And then on to Martin Häusling. Not here. And then we go on to Valentina Pangisano. Please.
Floor shows. Thank you.
Speaker 18
Thank you, chairman, and thank you to the rapporteur for this draft report, and thank you for the work done up to now. We welcome this draft opinion, which clearly highlights how health has been an undervalued priority in European policies, despite the key issues for social and economic resilience linked to this. We would agree with amendment 14, which proposes the introduction of a dedicated chapter for health in the national programmes with a view to having specific targets and resources. We think this is a key passage to move from a fragmented approach to a real, true strategic program. At the same time, we feel that some aspects could be further strengthened, and we'll be working on that with colleagues.
Speaker 21
First of all, for example, on amendment 13 on article 10, which introduced a 4% minimum threshold for health, we feel it would be important to clarify that these resources should be additional resources compared to the existing social resources in order to avoid the risk of internal pre allocations, which would not generate any real new investments in health systems. Secondly, on amendments on territorial inequalities, in particular article three paragraph five, we feel it would be useful to strengthen the link between priorities at European level and translating them into specific interventions financed at the national level, in particular, in the rural and lesser developed areas. Finally, and to conclude, we welcome this and the presentation of various amendments on reinforcing health staff and for prevention and mental health work as well. We want to strengthen how important it is. We feel that it is key to strengthen the role of territorial health workers and digital tools.
Speaker 19
For example, telemedicine to reinforce access to it. So in conclusion, we support the rapporteur's work, we're ready to contribute with targeted amendments to guarantee that health truly becomes a specific priority that can be measured in the next MFF. Thank you.
Speaker 22
Thank you, chairman. I support fully that we spent EU money on health, instead of weapons or the large democracy poster said the commission building. But spending money this way by a fund is very inefficient. We raise tech taxpayers money losing part of the value in the process, then we waste other persons on program administration, allocation of grants, reporting, accounting, project visibility, all these things. So in the end, we fund two administrators for each health worker and lose, like, half of the money we got.
Speaker 23
I suggest, generally, even if health is not mostly EU competence, we should fund access with EU money directly, either access or AI or resilience or research projects, directly, without the intermediates, and agree on that. Thank you.
Stine Bosse
Thank you so much. And then to Mister Heuser, understood you wanted to end, so that's you now. Thank you.
Speaker 20
Thank you. Hauser.
Thank you. I didn't speak earlier because I was not a shadow operator. But anyway, my opinion on this, and I've discussed this before, let me just repeat this point. We're going to have social and economic cohesion for farmers, for rural areas, for fisheries, for the seas, for welfare and for security. Well, the definition is very cumbersome.
Everything is being lumped together. Obviously, huge amounts allocated, $850,000,000,000 just for the next period, 2028 to 2034. But there's no clear allocation to the different sectors. So I think that really contradicts the logic of a budget. And so the whole budget is just fluid and can be moved around.
And that's something the Court of Auditors has been pointing out. And when we say we need a strong and healthy Europe, of course, that's true. We all support that idea. But farmers are part of that story. And how is it looking for the farmers right now?
Well, in the past, we've always had a common agricultural policy with a €387,000,000,000 budget fixed and set aside earmarked. But so now we're going to have €295,700,000,000. So there's a shortfall here of almost €100,000,000,000 for farmers. So €100000000000 are being taken away from farmers. And we're talking about a healthy Europe, that's great, but the farmers do have many problems. So it's absolutely unbelievable that we're going to have no fixed amount for farming as we had in the past funding period.
And that's something the Court of Auditors is criticizing. They say this new structure creates a lack of certainty, and this certainty for farmers is going to be reduced. Payments may take longer to be paid out. And the whole logic of an agricultural policy backed by a budget, against the backdrop of all the problems that we have, the dairy prices, cost prices. We know that fertilizer prices are going up as well.
And all of that is happening, and we come along and cut the budget for farmers by €100,000,000. Simply, I can't support that. So, yes, we have many important points in this text, but the budget is not clear at all. So it's useful for the commission, but it harms the beneficiaries. This is no way to plan.
Stine Bosse
This is no way to budget, and we criticize it. The court of auditors criticize. The patriots criticize it.
Now on to Mister Claco.
Thank.
Christophe Clergeau
Thank you very much. I would like to refer my colleague to the MFF interim report, which was voted in the budget committee, and we will vote on this in plenary next week because the answers to the questions are in the interim report. And I'd also like to go back to the point that health is not a European competence. In my region, in the Loire region in France.
Christophe Clergeau
Use Feder to finance innovation led by start-ups working in health care, to finance research surrounding health care, to finance infrastructure in hospitals for research and for patients. And in my region, we use the European Social Fund to help job seekers prepare to go into training and to work in the health care sector to become physiotherapists or nurses. So there is a use in terms of the funds in the regional partnerships to support health care action, which will help companies, hospitals, and citizens in all of our cities and regions. And I think that is what Victor Nagrescu and the rest of us want to defend. Thank you.
Stine Bosse
Thank you so much. And that concludes the interventions by members. And I will now, before we conclude the discussions, give the floor for four minutes to the commission. It is represented today by Priotje Kovalczyk, DG Batch. Please.
The floor shows.
Speaker 26
Dear chair, reporter, honorable members, thank you for your work on this draft opinion on the national and regional partnership plans. The plans will bring together new funds implemented by member states and regions under a single, coherent strategy. They will allow member states to design solutions tailored to their national and regional needs and challenges rather than relying on a one size fits all approach. At the same time, the proposal will strengthen synergies between policies, provide faster and more flexible support, simplify the current rules, and reduce administrative costs at all levels. The proposal also ensures predictable and stable support for all regions, farmers, and vulnerable communities in full compliance with the partnership principle by involving regions and local communities in both the design and the implementation of the plans.
Importantly, greater synergies and simplification will not come at the expense of support for key policies, whether in cohesion, agriculture, or health. The national and regional partnership plans will better link reforms with health investment, helping to strengthen the quality and resilience of health care systems, and support the development of health infrastructure. They will also take better account of the specific needs of each territory, helping to address health care challenges that are often highly regionalized. In addition, 43% of the plans will support climate and environmental objectives, and this includes pollution prevention and control. This will contribute to a high level of human health protection in line with the One Health approach.
The future EU facility will also play an important role in supporting health infrastructure, health and long-term care, and the promotion of common policies in the areas of health and safety for humans, animals, and plants, as well as animal welfare. Let me also underline that the next multi-annual financial framework and the national and regional partnership plans will keep social policy at their core. The European social fund implemented through the plans will support strong social objectives, with at least 14% of each plan dedicated to quality employment, skills, and social inclusion across Europe. In conclusion, the national and regional partnership plans will provide important support for health policies, and we look forward to receiving the final opinion, and continuing our cooperation on this file. Thank you.
Stine Bosse
Thank you so much. And then, for the final reaction from the rapporteur, over to you, Nick Gresco. Two minutes.
Victor Negrescu
I would like to thank everyone for their contributions, and I hope we can keep this good atmosphere also when drafting the final version of this opinion. It's really important for us to come up with a strong opinion and defend health when it comes to the national and regional partnership plans. Again, I hope altogether we can call for this allocation of at least 4% for health. This will mean roughly €35,000,000,000 across Europe. And I wanna mention that today in the cohesion policy, we have many actions across member states focused on health, including in my home country, Romania, where we are currently building 9 new hospitals with the cohesion funds.
And, of course, when you are building a hospital, you use technologies coming from across Europe. So, actually, there is a real added value for technologies, for capacities, for companies, for innovators, for public health professionals, across Europe when we invest in health. So, of course, we are tackling all the issues that you mentioned. We tackle prevention. We tackle mental health.
We are focusing on rural areas. We focus on innovation in AI. We speak about convergence with other EU programs. We speak about the possibility to deal with specific health solutions for children, people with disabilities. We deal with the health workforce crisis.
So we try to offer the possibility to member states and regions to do all of that. And I count on your support in making sure, again, we come up with a strong opinion on behalf of this committee. It would not be, you know, my own opinion. It will be the opinion of this committee, and I will kindly ask for your support in defending health when it comes to the negotiation that will continue to happen within this house, but also in particular in relation to the other institution that are supposed to also come up with opinions and perspectives on the national plan. Thank you so much.
Stine Bosse
Thank you so much. And I announce now the deadline for tabling amendments that is set to April 30 at 11:00. So now we go to the next item on the agenda, which is the consideration of the draft opinion on psychological risk, stress, and mental health at work. I will give the floor first to the shadow rapporteur for her presentation of the draft opinion, then to the shadow rapporteur, and finally, to any member who wishes to take the floor based on catch the eye. If you want to take the floor, raise your hand so that the secretariat can take note.
Miss Gevina, where are you? Oh, there you are.
The floor is yours for 4 minutes.
Speaker 28
Thank you, chair. Good morning, everyone. So, when we talk about workplace health, we too often think only about physical safety, so, you know, helmets, machinery, and regulations. So, you know, it's what we have come to know well through the last decades, but much like many other things, protecting workers' health has also changed. And for years now, with increased need for productivity and demands in the workplace rising, the European citizens have been dealing with work-related stress, burnout, harassment, and violence.
And all of those used to be marginal concerns, but now they are among the most common workplace risks in Europe. And we do know that such risks often seen as chronic stress are directly connected to depression, anxiety, cardiovascular diseases, weakened immune systems. They exacerbate any chronic disease a person might have and are, you know, overall detrimental to the health of our citizens. But unlike many other risks, the psychosocial ones are invisible, cumulative, and also harder to measure. And all of that leads to underreporting and insufficient prevention, putting a big strain on the health and health care systems, as well as also reduces productivity and subsequently negatively affects competitiveness of our economy.
So we need to protect the health of our citizens, to protect everything else. And even with all the efforts already made in the EU, in the last mandate, poor mental health is still one of the leading causes of work absence across the Union. And, you know, it's not just an individual issue. It's a public health challenge. So having that in mind, the best measure is always prevention and prevention at the root cause, which means that recognizing work organization directly affects people's health while establishing risk assessments that include psychosocial factors, stronger enforcement of existing legislation, and clear accountability for employers.
It also means promoting healthy work environments where, you know, employers feel employees feel safe, respected, and supported. We also need to prepare the health care systems to have a sufficient level of staff and capacity to help anyone that ends up suffering a health crisis as a result of workplace risks, be it stress-related cardiovascular crisis, burnout, or other mental health-related issue, just to name a few examples. So in the draft report, I aimed to address that by ensuring that safe staffing levels are secured in the health care facilities, as well as proposing to issue sector specific risk assessments and accompanied protective measures. So the goal is to address the fact that the health care workers face some of the highest levels of psychosocial risk in any sector, driven by long hours, staff shortages, emotional strain, and constant exposure to suffering and deaths. So these conditions significantly increase the risks which affect both the well-being of professionals, as well as the quality and safety of patients.
So addressing these risks requires systemic action, adequate staffing, supportive management, access to mental health services, and workplace cultures where seeking help is encouraged rather than stigmatized. So addressing workplace health is, in my opinion, an overall health care issue, as protecting workers protects them as well as it protects the functioning of our health care systems. I will finish with this. For now, I'm looking forward to this exchange of views as well as, of course, the future cooperation with all of you and fruitful negotiations. Thank you.
Stine Bosse
Thank you so much. And first, I will give the floor to Manuel El Dripa, EPP. Is he here online? Yes. There you are. Very good.
I hope you can hear me.
We hear you.
Speaker 29
Very good. Thank you very much indeed to the repertoire for this work. Humans believed for a long time that machines would take work off their load. We thought that when computers arrived, we assumed that machines would gradually take over ever more work, and we wouldn't be working so much. And today, it would be reasonable to make the same assumptions regarding AI, but the reality is quite different.
Speaker 30
Instead of working less, many workers are finding that they are expected to be connected the whole time, and pressure is going up. A Berkeley study shows this effect very clearly. Using AI, in many cases, does not reduce the burden on workers. It becomes more intense. Processes become more complex, pressure goes up, and workers are expected to be more productive.
Speaker 29
So it's not reducing workload, it's actually changing workload. So there's always one culture, which is mentioned in the report, is a key problem here, one that needs to be taken seriously, especially for people with children. And in the health sector, we need to pay attention to that because the work pressure is extremely high. Other affected areas could also be focused on, for example, education and teachers. Here, we're seeing that there's a lack of qualified workers and a high burnout rate.
Nevertheless, with all these objectives, we need to stay practical and pragmatic. Especially when it comes to SMEs, there is a risk that there is going to be too many burdensome reporting risks, and this will increase their administrative burden. So national competencies also need to be respected, in my view. And that's where we need to focus on proportionality and finding practical, workable solutions. Thank you.
Marta Temido
Obrigado, président. Thank you very much. Let me thank and congratulate the Raptor for the work that's been done. And we believe this is a fitting time to have this discussion. It's the right time now to take a step forward and protect workers in the European Union.
The psychosocial risks at the workplace really are there, and it can have a negative health impact not only on individual health, but it can cause mental illness, stress, burnout and exhaustion, but it can also impact competitiveness and performance in the workplace for the companies concerned. And we all know that psychosocial risks at work and health impacts are very much subject to stigma. Statistics tell us that 45 percent of workers prefer to struggle with mental health issues and that impact on their work. And so this is a fact that we need to look at, and we need to try and overcome it. We need a specific directive to protect European workers against psychosocial health risks at work.
Now this debate, which will ensue, should focus on three key issues. First of all, we need to be clear about the definitions and the terms we use. We need to define the terms clearly. We need to talk about how far the European Union can go in terms of its role and what the role is for the member states. We also need to define the workers' rights, but also the rights of businesses and their role.
We must prevent psychosocial risks for the workers. And this shouldn't be just restricted to the health care services, health institutions, hospitals, and so on. It should be something that everyone is involved in, and the whole company, the whole body, is involved in. We need to become more competitive in the European Union. We need to have a workforce that drives our economy, and we have to have greater social cohesion.
Speaker 31
And it's really this kind of initiative that will help us achieve that. Thank you.
Stine Bosse
So much. And then to Mister Chichioli. I hope I pronounced it correctly. Please.
Carlo Ciccioli
Thank you. Well, I'm trying to look at this in a slightly broader context. I think that the provisions are slightly superficial in this document. The problem of workers up till now has been the physical concerns, but the last few decades have been the psychosocial. If I look at the services sector, I mean, we talked about social health.
There's aggressiveness, stress of excess working hours, and strong demands for the users, because now the users are much more aware of a more passive approach than in the past. From personal experience, because I worked in the sector for many years, there are two different types of conduct. One is due to excessive pressure of the people, and then the subsequent pressure from the bosses on the staff themselves, and that's one aspect. But there's another aspect still on the workers. Is the workers who's ex best to exposed to critical situations who try to avoid them, but this is not a good condition to work in because we have the two extreme services that are not provided or badly or people that have paid the consequences for too much pressure on them.
So we've got this situation where we've got workers against the bosses, or workers who try to avoid the stress being placed on them. I think I would approach this in a much broader sense. And, obviously, this is still my own opinion. First of all, risk prevention through the staff's point of view. How are they recruited?
Primarily, they're recruited through a check on their preparation or training. There needs to be another type of selection looking at the vulnerability of people, how working in this can make them more vulnerable, in particular looked at from a psychosocial point of view. For example, in schools, the staff is chosen based on the quality of training, but often, excellent people can't manage the classrooms and the students. The same happens in justice, elsewhere. So we need to look at this.
The selection criteria and recruitment need to consider this as well, considering the vulnerability of staff.
Stine Bosse
Thank you very much. I don't see any asks for the floor, so I will give the floor back to you, Jorvah, and I will give you, of course, two minutes to conclude.
Speaker 28
Thank you. Thank you very much. I will try to be short. First of all, of course, thank you to all of you contributing. I'm looking forward.
I think we all have, at the end of the day, the same goal regarding reducing those psychosocial risks in the health care sector in this case. Thank you also for all the comments. I think, you know, they reflect an important debate also shared, understanding that something needs to be done. Of course, the views are slightly different. Maybe also the focus is, as such, but, you know, I think we are all clear that the psychosocial risks are, as I said, no longer a marginal issue, but, you know, the main workplace challenge in Europe today.
So the question, I think, is not if we act, but how we act? So I think that we will find the right balance in this report or the opinion because, you know, doing nothing or doing too little is not a neutral option, at least for me. It has real costs, not only administrative ones, but, you know, concrete real costs for the workers, for the health care systems, and also for our economies. So as I said, this exchange of use was an important step to get the approach right, and I look forward to the negotiations and continuing the work together, in this spirit, and have the best as possible report or opinion at the end. Thank you.
Stine Bosse
Thank you, also to you. And this concludes the discussion. Thank you for that. The deadline for tabling amendments is set to May 5 at 11:00. So our next item, dear colleagues, our last point on this morning's agenda, is the presentation of the policy department study on patient-centered health research and innovation in the European Union.
This study explores how patient centeredness is understood and applied in research and innovation across the European Union, drawing on the case studies from Germany, Netherlands, and Belgium, and insights from a range of stakeholders. It aims to inform future policy and practice. And I want to welcome here on the podium our speakers. So the policy department has invited two experts to present the study. Kosima Lentz, who is a public health PhD candidate at Johns Hopkins University and a researcher in global health and health policy at the Center of European Policy Studies, with a particular interest in marginalized and disproportionately affected populations. And besides her, Petra Vaccone, who is a research assistant in global health and health policy at the Center for European Policy Studies, with a particular focus on health equity, financial protection, and anticorruption measures.
Welcome to both of you, and I will now give you the floor for your presentations. And then afterwards, we will have a question and answer. So please, the floor is yours for 10 minutes.
Kosima LENTZ
Thank you, honorable chair. Dear members of the SAND committee, ladies and gentlemen, thank you for the opportunity to present this study on patient-centeredness in health research and innovation. Next slide. Briefly, a note on the historical context. So the concept of patient centeredness emerged in the sixties as part of a broader effort to reorient medical practice away from a narrow disease-focused model towards recognizing patients beyond their clinical needs and experiences.
Patient-centered practices are increasingly implemented in the clinical care and management space, though this is distinct from research and innovation where patient-centeredness remains ambiguous and is interpreted and applied in diverse ways. Next slide. So with that context, the study aims to provide a preliminary illustrative analysis of how patient centeredness is defined, operationalized, and implemented within health R and D across.
Speaker 35
Down just a little bit, because the interpreters will be stressed? We don't want that.
Kosima LENTZ
How health R and D across the EU and the member states is implemented, with particular attention to decision-making processes and agenda setting. Next slide. Across the literature, there is no common definition of patient centeredness in the context of R and I. In the absence of such consensus on terminology and scope, there remain variations and inconsistencies of approaches in practice. Next slide.
So in this sense, it's useful to think of patient-centeredness approaches that encompass a spectrum of practices ranging from being informed and consulted to involvement to partnership and cocreation, each reflecting different levels of influence and participation. Next slide.
Petra VACCONE
The data revealed differences in how these terms are understood, and the preferences individuals and institutions have concerning the use of terms. Some perceived that the terms can be used interchangeably, while others distinguish between them. There's also variation in preference in the use of various terms. Some indicated preferences for terms like patient involvement because of perceptions that this term implies increased agency over other terms, such as patient engagement. Not having a unified, uniform definition presents some challenges, particularly in terms of comparability, including on implementation and evaluation of impact.
Speaker 38
Next slide. What did become apparent in the study is the consensus around the values and principles of patient-centeredness. In the literature, principles including partnership from the start, so codevelopment with patients including in the design phase of R and I, as well as recognizing patients' rights to participate in decision making, along with other principles like accountability and transparency. For our survey, respondents reported similar principles, including capacity building and empowerment, relevance, and diverse representation. Next slide.
Petra VACCONE
Patients have distinct perspectives, experiences, and needs that are unmatched by other stakeholders in research and innovation. Integrating these perspectives into research priority setting and implementation enhances the legitimacy, relevance, and potential impact of research. It supports better identification of unmet needs, more appropriate study designs, fosters transparency, and improves outcome measures. Next slide. A central challenge is the absence of an agreed-upon framework or validated tools for assessing the impact of patient-centered research and determining which outcomes should be measured.
There currently aren't standardized methodologies for conducting or evaluating patient-centered research, and there aren't any consistent approaches to measurement. So a lot of the data ends up being very qualitative and anecdotal, and researchers adapt and integrate patient-centered principles in a context-dependent and often ad hoc manner. Next slide.
Kosima LENTZ
In terms of the EU health R and I landscape, there has been increasing integration and operationalization of patient-centered approaches. These are mainly driven through Horizon Europe and the Innovative Health Initiative. There's also growing interest on the commission side in personalized medicine within which patient-centered approaches are foundational, and these include increased attention to patient-reported outcome and experience measures. The OECD also recognizes patient-centeredness as a core dimension of health system performance. Next slide.
In terms of the landscape across member states, patient involvement is sometimes defined in legal and/or policy instruments that then shape its operationalization, but there are quite big differences in the available infrastructure and funding, which presents significant challenges for integrating and implementing patient-centered approaches in multinational EU R and I projects. There's also an absence of cross member state learning mechanisms, which limits their system-wide prod progress. Next slide. In terms of some structural and systemic challenges to implementing patient centeredness in R&I, the tools and guidance from EU funded projects remain ad hoc, and they're not scaled. They're not systematically integrated.
The health research systems are also not routinely designed to embed patient-centered approaches, and, generally, the culture around this is underdeveloped. And so the responsibility for patient engagement often falls on individual researchers or institutions, and there are also limited mechanisms to assess and document meaningful patient engagement. Next slide. A few other challenges include the timing and inconsistency of engagement, the technicality of language, methodologies not being patient friendly, and generally limited human and financial resources. Next slide.
For some case studies, the following three member states provide examples of enabling contextual factors and implementation of patient-centered approaches in practice. Next slide. For Belgium, the overall context is that patients are increasingly recognized as experts by experience, though patient involvement is still largely funder- and researcher-driven as there's no national framework. There is strong policy anchoring in select initiatives, notably the need project from the Belgian health care knowledge center, which provides a framework for assessing unmet patient and societal needs. In terms of practical implementation, there are permanent cross-disciplinary patient advisory boards at a number of universities.
There's a deliberate preservation of the average patient perspective over scientific training, and patient involvement increasingly occurs at the earlier stages of research. Though, again, the quality of involvement heavily depends on individual researcher experience and institutional affiliation. Next slide.
Petra VACCONE
For Germany, early institutional initiatives like patient involvement boards and councils at major research institutions contributed to visibility and helped inform subsequent policy and funding frameworks. The country also has health research priorities guided by a federal research framework that patients contributed to shaping. Interviewees spoke to several enablers of patient involvement, including institutional commitment at senior leadership levels, explicit funding and funder requirements, and specialized patient involvement coordinators. There were also some challenges discussed, including patient recruitment and selection, training for both patients and researchers, limited operational guidance, and insufficient resources, especially for activities not tied to individual projects. Next slide.
In The Netherlands, patient organizations have formal roles in policymaking, guideline development, and research through structured collaboration. Patient involvement is also being more institutionalized through requirements in public and project funding. Some challenges that stakeholders spoke to include remuneration of patients and ensuring adequate time for patients and patient organizations to participate in decision making and agenda setting, including in proposal design. Next slide. We identified a few best practices and enablers, including establish little bit. Oh, sorry.
My apologies. We identified a few best practices and enablers, including establishing formal patient involvement mechanisms, like patient advisory boards, and ensuring availability of dedicated funding, as well as having patient-driven needs-based priority setting. Next slide. There were four main categories of recommendations based on the study findings. Next slide.
The first is strengthening EU regulatory and governance frameworks to systematically embed patient centeredness across the health R and I life cycle. This includes, for example, establishing a patient-centered health R&I strategy and guidance at EU level, as well as establishing mandatory patient involvement standards. Next slide. The second is funding and resource allocation for operationalizing, tracking, integrating, and sustaining patient-centered approaches. This includes things like including a dedicated budget line for patient involvement and health R and I grants.
Next slide. The third recommendation is to prioritize and support capacity building for patient-centered practice across stakeholders and promote continuous learning ecosystems. This includes things like implementing iterative learning mechanisms and feedback loops with accountability mechanisms. Next slide. The final recommendation is knowledge capture, the generation of impact evidence, and the creation of dedicated spaces to showcase and disseminate best practices.
This includes things like creating an EU-level repository on patient involvement best practices and metrics. Next slide. To wrap things up, a few key takeaways to highlight. There is an increasing recognition of the value add of patient-centered approaches and health research and innovation, but implementation continues to vary. Enabling governance mechanisms, institutional learning platforms, and cultural change levers would be beneficial to systematically embed patient-centered actions across EU health R and I.
Next slide. We'd like to thank the stakeholders we interviewed for their time and for sharing their expertise and insights. Next slide. Thank you very much for your time.
Stine Bosse
I mean, I call that excellent timing. You were that's really perfect. Thank you very much, and I have a couple of questions for you. So and I will, of course, also invite my colleagues to intervene. But I think all of us who work in this area with political issues know the pleasure and the knowledge actually you get from talking to patients and understanding the circumstances that patients are in, it is really, really valid input to get from all stakeholders, but especially from patients, obviously.
So I've got two questions. Which member state would you consider further ahead in implementation and which are behind? If you can just hint it, perhaps, or it's a region or whatever. And I guess there would be tangible differences. But if you were to advise the European institutions on concrete mechanisms or policies that we could take on board, what are the tools that you could recommend with all the knowledge that you have gained?
And, again, I want to stress it's for many of us, really important knowledge. But how do we operationalize it? How does it get into what we are actually doing?
Petra VACCONE
Thank you very much for the questions. The first on the member states, the study included three member state case studies. These three were selected in part because they kept coming up in our conversations with stakeholders and interviewees as excellent examples of countries that have begun to operationalize more systematically this concept into practice. So I think those are already three really excellent examples. We didn't necessarily review the full extent of the member states within the scope of the study, but I think that is something that would be important to explore.
The second piece in terms of concrete mechanisms and policies to be able to operationalize this, there are already existing tools and guidance that come from EU funded projects, that already exist, but they don't necessarily have the resources to scale this up. So finding ways to translate what already exists into practice is one way to do that. There's already knowledge that's a bit more fragmented across the board. So I think finding ways to create spaces where knowledge can be captured more systematically to be able to understand best practices across the board and find ways to leverage what already exists in this space. Do you have anything to add?
Kosima LENTZ
Maybe just briefly to add, for example, in the RNI instruments of Horizon Europe and the innovative health initiative, there are a number of references to encouraging use of patient centered approaches, but there's no enforceable mechanisms. There's no way of capturing the mechanisms. So developing indicators to at least start tracking as well, when these are being implemented. And as my colleague said, there's a number of guidance documents, toolkits coming out of existing projects that would be very valuable, as a way of coordinating already across the board from an EU level to encourage the use of patient centered approaches. But I think the lack of, yeah, enforceable and proper guidance leads to this piecemeal approach, and it falls on the shoulders of researchers and institutions.
Stine Bosse
I'll come to mister Veriga just in two seconds. I just have two ideas, perhaps for you also to think about. There are two areas where there is some kind of systematic collection of knowledge. One is the framework of the health data space where there could be a compartment for, you know, feedback from patients, and there is the ERN systems that are working for the rare diseases area. And they're sort of in place globally, in Europe.
So if there was a place to start to collect some of this, and of course, as AI will be part of our new reality or is part of our new reality, these data would be easily processed in the future. Anyway, I will now give the floor to Mr. Veriga.
Aurelijus Veryga
Thank you, chair, and thank you for a good presentation and an overview that is very useful. And probably we all agree that the patient plays a role in every single stage of the process, would that be policy making or the clinical practices? The role is essential. But my question to you would be, have you found or analyzed practices in the member states? How do you help patients to be organized?
Speaker 40
Because, you know, we all understand that we have to involve patients, but it's not easy sometimes to find them. Where do you find or how do you select who would come and take part? And, it's easier when they are really organized, when they do have organization. And, have you analyzed or seen the practices, how the member states help them to be operational and independent from the interest groups? Because sometimes the patient groups are also used to make an influence.
Speaker 41
So it's the best way to avoid that is to help them be operational and independent. So if you have found the practices, it would be very interesting to listen to you. Thank you.
Petra VACCONE
Thank you very much. That's an excellent question. Our study didn't necessarily identify solutions for that, but it definitely reflects some of those challenges. A lot of the stakeholders across member states echoed that point in terms of the challenges, especially identifying patients that aren't necessarily organized in institutional sort of patient advisory boards or existing organizations, especially in terms of ensuring diversity and representation in gender and those experiencing homelessness, etcetera. So there's definitely challenges in terms of especially having the resources to be able to go out and find them, but also knowing sort of where to begin in terms of that search.
I think part of that also stems from the resources component in terms of not necessarily having the means and time, especially if it's a time-bound project, to be able to conduct those sort of activities. So I think those are definitely challenges that are reflected in our findings, but there aren't necessarily any solutions that we identified at this point. But I think that's definitely something that could be explored more in depth. Do you have anything to add?
Kosima LENTZ
Yeah. Maybe just to add. In that sense, things like permanent cross-disciplinary patient advisory boards, like we see in Belgium and the other case studies with other member states as well, that also helps in a way to bring on board and have a pool of patients who can then be consulted and help tap into maybe less represented disease areas rather than having project-specific patient consultation. So that could be one, yeah, best practice that could be learned for other member states. But, again, yeah, the early and consistent engagement, again, we still see last minute calls, whether it's for Horizon Europe calls, for patient organizations to be on board.
And in that way, it's not meaningful, and only the best organized patient organization groups are then included. So, yeah.
Carlo Ciccioli
Ciccioli. Ciccioli. Thank you. I think we always need to look at the issue with our own eyes, but the eyes of others as well. The problem of case management, the point of view of the doctor or the nurse or the structure from the clinical, biological issues, behavioral, etc.
But the other side is the patient's point of view and their family, of course, because, generally, this involves a family as well, who are more fixed on help, etcetera, and care rather than the in-depth aspects because the patients generally do not know about the issues, whereas the staff are interested in all the rest. So to try and provide a single coherent response, we've got the problem of consulting with the patient's associations and more often with the family associations. They don't often have the resources to participate in the actual curative phase, but the family associations are much more aware of this. So I think we need to check on how we can manage the processes from both points of view. So the structure and the staff who provide responses based on the clinical knowledge, but then there's the patients and families who look at the actual care being given.
And that's where I think we need to delve into this, since I am a doctor who worked for many years in different health structures. These two aspects, which are apparently different, need to find a way to work together. Thank you.
Petra VACCONE
Thank you very much. That's an excellent point. I think that's also very much what we emphasized in the study in terms of ensuring that the patient-centered perspectives, needs, values are complementary to the scientific evidence, working alongside providing sort of enhanced value add in terms of both the clinical aspects, which wasn't necessarily the scope of the study. It was more focused on the research and innovation side. But patient centeredness is very much increasingly being implemented through the clinical and more disease-oriented sort of practice.
But just to say that that is very much in line with our findings as well.
Stine Bosse
Okay. Thank you very much. And, this concludes this discussion. Thank you. Really interesting and important work.
Thank you very much for doing that. And then I want to ask if there's any subject under any other business. That is not the case. Then I just want to announce that our next set meeting will take place on May 6. Thank you very much.
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