Silvia Ussai: JACARDI aims to fill the gaps in the management of NCDs
“This initiative is remarkable because, while many projects focus on non-communicable diseases, JACARDI prioritises policy integration”, says Silvia Ussai, a member of JACARDI’s Scientific Advisory Board. Drawing on over a decade of experience in shaping health policies across local, national, and international levels, and managing major programs like H2020, and NextGenEU, she underscores how JACARDI tackles critical gaps towards the reduction of major risk factors leading to cardiovascular diseases and diabetes.
What significance does JACARDI hold for you and your organization in terms of its mission and values?
JACARDI truly goes beyond the state of the art in non-communicable diseases (NCDs). It is a transformative initiative in the fight against NCDs. For the first time, JACARDI seeks to standardise approaches within and beyond the EU to ensure a coherent strategy for NCDs, and cardiovascular diseases in particular.
The project recognises that there are significant differences in the way countries address NCDs due to differences in government investment and health care frameworks, resulting in different patient pathways. By adopting a standardised approach based on the highest scientific standards, JACARDI brings an innovative dimension to healthcare.
This initiative is remarkable because, while many projects focus on non-communicable diseases, JACARDI prioritises policy integration. Its commitment to high standards of care throughout the patient journey is closely aligned with the mission and values of our organisation.
In your experience, what are the most critical economic and policy considerations when implementing health initiatives in diverse global settings?
When I was a medical student, my professor of internal medicine used to say: “the two most challenging things to achieve with patients are convincing them to stop smoking and losing weight”. These are the main drivers of non-communicable diseases. It’s important to focus on behavioural science and provide patients with evidence to effectively support these changes.
Let me give you an example. Pregnancy is often accompanied by advice to stay physically active, but the consequences of insufficient activity — such as what it means in real life to depend everyday on insulin injections to keep your baby safe — are not clearly communicated. Many patients do not fully understand how their habits affect their lives, with consequences such as gestational diabetes, which is highly disruptive. And that is where JACARDI comes in, to fill that gap, to give patients the information to understand what they can do, what their power is, and the consequences of not following certain guidelines.
Policymakers also need to recognise the importance of investing in the prevention of NCDs. The effectiveness of preventive programs remains largely overlooked, despite all the evidence highlighted during the COVID pandemic. Budget constraints make it difficult to prioritise among multiple health threats, including infectious diseases and cancer. Patients need to be actively involved in prevention, rather than relying on drugs alone. Without their engagement and empowerment, financial resources will always be insufficient to address these pressing health challenges.
How do you see JACARDI’s role in tackling the increasing prevalence of cardiovascular disease and diabetes in Europe?
JACARDI addresses key gaps in the management of cardiovascular disease and diabetes, such as health literacy and patient behaviour. If you look at the JACARDI work plan, work packages reflect this in a crystal clear manner, relying on the highest standard of scientific evidence to date to improve outcomes of NCDs. So JACARDI is leading the healthcare transformation toward the prevention of NCDs at the EU level and beyond.
What role do you believe JACARDI can play in shaping future healthcare policies and practices, especially in low-resource settings?
I believe the most important role it can play is to scale up and transfer lessons learned in developed countries to low-resource settings. By acting as a pioneer, it can help to replicate successful policies and practices and guide other regions in addressing these health challenges.
Silvia Ussai is an International Public Health Manager with a unique skill set obtained through a double degree as Doctor of Pharmacy and Medical Doctor. She holds a specialization in International Healthcare Management from SDA Bocconi and, in 2019, she successfully completed the Program on Negotiation (PON), the executive-level negotiation training offered by Harvard University. With over a decade of experience, Dr. Ussai has made significant contributions to health policies and pharmaceutical systems at local, regional, national, and international levels.
Learn more about Silvia Ussai and her work and connect on LinkedIn.
Birgit Beger: An EU Cardiovascular Health Plan is the best way forward
Birgit Beger, CEO of the European Heart Network (EHN) and member of JACARDI’s Stakeholder Advisory Board, strongly believes that investment in health is a win-win for society overall. With the EU stepping up with the European Commission’s recent announcement of an EU Cardiovascular Health Plan, Birgit Beger shares her hope for an ambitious proposal by the European Commission in line with the work undertaken for the European Beating Cancer Plan. She sees JACARDI’s importance in leveraging knowledge and best practices across Europe and underscores the need to involve stakeholders early on, because they can help bridge the gap between policy and practice.
What significance does JACARDI hold for you and your organization in terms of its mission and values?
In line with EHN Strategy, JACARDI, with its joint action of European pilot projects to reduce the burden of cardiovascular diseases and diabetes, mirrors one of EHN’s core pillars: prevention. Furthermore, EHN supports JACARDI’s overarching goal of improving CVDs and diabetes in terms of disease management.
In your experience, what are the most pressing challenges in implementing effective healthcare policy at both the EU and national levels in the area of cardiovascular disease prevention?
There is a disconnect between the political and healthcare practice levels. For example, the pressing societal burden of cardiovascular diseases has only recently come to the attention of policy makers at national and European levels. The recognition of the urgency for action is growing and yet, given that we are speaking these days about a permacrisis, many politicians are dealing with a myriad of urgent priorities simultaneously. However, as has always been argued, investment in health is a win-win for society overall, financially, for social inclusion and cohesion. This is particularly relevant for cardiovascular disease (CVD), which is the number one cause of mortality and morbidity in Europe and globally.
EHN’s vision is that “every person in Europe should grow up and live in a sustainable environment which promotes cardiovascular health. Premature and preventable deaths due to cardiovascular diseases should be reduced by 30% in 2030. State of the art, personalised care and quality of life should be accessible and attainable for those born or living with CVD”. In this context, taking legislative action to reduce the impact of major risk factors for CVD (unhealthy nutrition, smoking, physical inactivity, air pollution and climate change, but also hypertension, obesity and high cholesterol levels) are of the utmost importance in reducing the burden of CVD.
This being said, not all CVDs are preventable. Therefore, it is equally important to invest in early detection and management of cardiovascular diseases, thereby enabling people who are at high risk of developing CVD, or who have already contracted a CVD, to actively manage their condition, so that they can live to a mature age, with a good quality of life.
What do you see as the key success factors for achieving long-term impact in reducing the prevalence and burden of CVD? How is the EU CVH plan coming along?
Indeed, EHN believes that an EU Cardiovascular Health Plan is the best way forward since it represents a structured and financed approach to combat the cardiovascular burden on society and the increasing CVD numbers, which are already emerging for 2023 and 2024 following the Covid-19 pandemic. We see that many Member States are taking action for national CVH plans, that the European Parliament is supporting a European CVH plan and we are pleased to hear that the European Commission President Ursula von der Leyen identified CVD as a new health priority for her renewed mandate. It is important that the European Commission comes forward with an ambitious proposal in line with the work undertaken for the European Beating Cancer Plan.
Therefore, we applaud wholeheartedly the recent adoption of Council Conclusions on the Improvement of Cardiovascular Health in the EU on 3 December 2024, as well as the commitment from the new Health Commissioner, Olivér Várhelyi, to develop a European Cardiovascular Health Plan. EHN particularly welcomes references made to prevention, women’s health and research. A strong focus on the patients’ voice will be a decisive quality element of such a future European plan. It will hopefully trigger efforts at national level to improve or develop national cardiovascular health plans.
How important are EU-funded projects like JACARDI in addressing NCDs, and what role do they play in complementing the work of other organizations like EHN?
JACARDI has a real potential to implement policy at national level and to make tangible inroads at the European level. It is very promising that so many health institutions are involved in leveraging knowledge and best practices across Europe. EHN is there to support and advise on the work, but also help to disseminate results across its membership.
As CEO of the European Heart Network, you have a unique perspective on the dynamics of cardiovascular health advocacy across Europe. What lessons from your experience there could be applied to projects like JACARDI to maximize their effectiveness?
It is most important to involve stakeholders early on because they can help bridge the gap between policy and practice. As EHN, we can bring expertise to the table from our members at national level, namely, the patient experience, but we also speak to national and European policy makers. In this way, projects such as JACARDI can be fast-tracked further to develop results, through our consolidated support, which will work in practice through the informed connections these layers will bring.
About Birgit Beger
With 22 years of EU public policy experience focusing on leading European Associations like Medical Doctors, Lawyers, Health NGOs, Birgit Beger is a well-respected senior executive. Birgit is a qualified lawyer and skilled communicator with senior management experience and diplomatic outreach to all political levels, both at the national and European level. She has brought considerable added value to the leadership roles she has held during her tenures as CEO of the European Cancer Organisation (ECCO), and as Secretary General of the Standing Committee of European Doctors (CPME). She is a member of WHO-Europe Regional Director’s Advisory Council on Innovation for Noncommunicable Diseases (the NCD Advisory Council) and is the CEO of the European Heart Network, a leading advocate and key partner in shaping and advancing the European Cardiovascular Health Plan.
Learn more about the European Heart Network here & connect on LinkedIn here.
Knut Inge Klepp and Linda Granlund: It’s important to find ways to build a community
With more than 1,600 health care professionals, scientists and public health experts involved, both JACARDI and JA PreventNCD recognize the necessity of fostering and building a strong sense of community and collaboration. According to the coordinators of JA PreventNCD, Knut Inge Klepp and Linda Granlund, building that sense of unity is no small feat, but is essential to make the most of the extraordinary investment and collective effort to tackle non-communicable diseases across Europe. In this conversation, the two coordinators explore the opportunities presented by this unprecedented joint commitment to prevention and the challenges of coordinating such large-scale projects.
What does JACARDI mean to you personally and to JA PreventNCD?
Knut Inge Klepp: There are so many synergies and so many opportunities for collaboration. It’s really useful to be able to work closely with the coordination team at JACARDI. Having colleagues you can share your victories and challenges with strengthens us as a team.
Linda Granlund: I agree with Knut Inge. Working closely with JACARDI is incredibly valuable for us, both as coordinators and as collaborators. It allows us to discuss details, but also to make sure that we avoid any overlap. On a personal note, I have lived with type 1 diabetes for 42 years, so staying informed about the developments in this field is not only professionally important but also deeply relevant to me.
Thank you for sharing! As Dr. Gauden Galea of WHO Europe explained at the Synergy meeting in Brussels this autumn (Strengthening NCD Monitoring Systems in the EU: A Collaborative Approach), after the COVID pandemic, the momentum for prevention and treatment of noncommunicable diseases was lost and the focus shifted to other areas of public health. How do you see the situation now?
Knut Inge Klepp: Well, we have these two joint actions, where the European Commission and the Member States have combined their efforts together, along with the smaller action grants. In total, almost 200 million euros are on the table. I think that reflects a significant turning point. Moving forward, our focus will be on making the best use of the substantial financial support, human capital and political commitment behind these projects.
Linda Granlund: When the Commissioner emphasized this focus, it signaled a significant shift, underscored by strong engagement and active involvement from Member States. With 21 countries participating in JACARDI and 25 in JA Prevent, it’s clear that these nations are committing substantial effort and resources to support our work.
How do you maintain focus while providing flexibility for task leaders and experts?
Linda Granlund: It’s important, to refer back to the background documents, Europe’s Beating Cancer Plan and the Healthier Together initiative. These provide essential guidance amid the many details of the project, work packages, tasks and subtasks. Without anchoring our efforts to these overarching goals, it’s easy to lose focus.
Knut Inge Klepp: First and foremost, it’s important to recognize that this is a significant challenge and we are fully committed to addressing it. Building on what Linda mentioned, our main objective is to ensure that our work aligns with the background documents. We regularly review these objectives and ask work package leaders, task leaders, subtask leaders and even pilot leaders to reflect on how their efforts contribute to the overall objectives. This ongoing process ensures that we are constantly reminded of what we are working towards and what we want to achieve.
Coordinating a project of this scale requires resilience, flexibility, bulletproof management and scientific rigor. What has been the most unexpected challenge you have faced so far in your first year, requiring you to think outside of the box?
Knut Inge Klepp: There are many challenges. One thing we’ve focused on recently is realizing that while we have frequent contact with a smaller group of work package leaders and maybe the task leaders and so on, there are probably between 500 and 1,000 people involved in this project – many of whom we haven’t met personally. We’ve interacted with a lot of them on screen, but it’s also important to find ways to build community, ownership of the project and a common culture. And that is also something that you are very consciously working on within JACARDI.
Linda Granlund: We have talked a lot about the different cultures involved when you have 25 countries working together. Finding a common tone is very important. How do we talk about the project? What do we emphasize? This process takes time, especially as the people involved come from different backgrounds, even if some share similar expertise.
Your dedication to creating a more health-promoting environment in Europe is well reflected in your work with a Youth Advisory Group. In your vision, what’s the NCD issue you envision for them to have to solve when you hand over the future?
Knut Inge Klepp: I started working on my first international non-communicable disease (NCD) prevention project in 1979. That was 45 years ago. Looking back, 30 years seems like a pretty short time. The scale and the context are different, but it’s striking that some of the issues we’re dealing with are quite similar. I think one of the values of this youth panel is their ability to bring a perspective that is grounded in their reality. In terms of health issues, we are seeing the convergence of NCDs with mental health and infectious diseases. The pandemic highlighted the vulnerability of people with underlying NCDs to infectious diseases. Addressing these interconnected challenges is something that today’s young people will have to deal with, even as we continue to work towards solutions in the present.
Linda Granlund: I think when we hand over the results in four or five years, we’ll have an understanding of that. Collaboration across sectors is essential, as we now focus on addressing the underlying factors that contribute to preventing NCDs. These are primarily related to the health care system, but we need to involve the other sectors more, such as the school sector, the transport sector, and create a mutual understanding of why they need to be involved and in what capacity. With the support of the EU Commission, this approach will benefit all the countries involved.
Learn more and connect:
JA Prevent NCD
Linda Granlund is the Division Director for Public Health at the Norwegian Directorate of Health, a role she has held since 2015. With over 20 years of experience, she has led initiatives to improve public health and nutrition. Previously, Linda worked in roles including Director of Health and Nutrition at a Norwegian food company that produces and markets some of the country’s most well-known and beloved food products, where she advanced projects to promote healthier eating. Linda also served as Vice Chair of Diabetesforbundet, the Norwegian Diabetes Association, advocating for better diabetes care. Her expertise spans health policy, nutrition, and public health advocacy.
Knut Inge Klepp is the Executive Director of the Division of Mental and Physical Health at the Norwegian Institute of Public Health. He has had an extensive career in public health, previously serving as the Director General of Public Health at the Norwegian Directorate of Health. Klepp is also an adjunct professor at the University of Oslo. His academic focus includes adolescent nutrition, obesity prevention, and nutrition policy. He has led numerous EU research projects, has published over 250 papers in peer reviewed journals and contributed significantly to international health initiatives, including WHO’s efforts to reduce non-communicable diseases.
Learn more about Knut Inge Klepp and his work here and connect on LinkedIn here.
Elisabeth Dupont: A joint approach on CVD and diabetes is more than just the sum of the two!
JACARDI has the potential to be truly transformative according to Elisabeth Dupont, Regional Manager at the International Diabetes Federation Europe (IDF Europe) and member of JACARDI’s Stakeholder Advisory Board. In an enlightening discussion, we explore the powerful synergy of tackling diabetes and cardiovascular diseases through an integrated approach. With years of experience in patient advocacy, Elisabeth shares valuable insights on policy engagement, stressing the importance of early collaboration with policymakers, while harnessing the collective voice of national diabetes associations and people with lived experience. Her expertise particularly shines through when discussing patient involvement in healthcare initiatives.
How do you see JACARDI’s role in tackling the increasing prevalence of diabetes in Europe?
Over 32 million people in the EU live with diabetes, and this figure is expected to rise to 38 million by 2030. Adding to this challenge is the fact that more than one-third of people with diabetes remain undiagnosed, underscoring the urgent need to improve diabetes prevention, management, and care. Diabetes is a highly complex and evolving condition, with various expressions and causes, requiring a life-course approach. Its scientific and policy links to cardiovascular diseases (CVDs) further highlight the importance of initiatives like JACARDI.
The Joint Action on Cardiovascular Diseases and Diabetes, which addresses the entire patient pathway, has the potential to be truly transformative. By bringing together 76 partners across 21 countries, JACARDI will enhance understanding of the diabetes landscape at regional, national, and European levels. Successful pilot projects will serve as proof of concept, demonstrating what truly impacts health outcomes and quality of life for people with diabetes, and how healthcare systems must adapt or transform to improve detection, early diagnosis, access to education, and high-quality treatment and care. A joint approach on CVD and diabetes is more than just the sum of the two!
What advice do you have for JACARDI’s pilots to translate their results into policy?
My first piece of advice would be to engage with policymakers as early as possible, leveraging the support and influence of national diabetes associations and people with lived experience. Translating project results into policy changes requires collaboration with the community and a clear understanding of how the project aligns with regional and national diabetes priorities, such as addressing healthcare workforce shortages, improving access to care in rural areas, or enhancing early diagnosis, integrating care and ensuring equitable access to innovation. It’s also essential to demonstrate the added value for healthcare systems and highlight the pilot’s positive impact on patient outcomes and quality of life.
IDF Europe is one of the key stakeholders of JACARDI. How can we strengthen this cooperation to address the growing challenge of diabetes and bring real and tangible added value to populations and patients?
IDF Europe is an umbrella organization of 72 diabetes associations, active in 45 countries, representing both people living with diabetes and healthcare professionals. IDF Europe strongly believes that the voice of people living with diabetes must remain central at all levels to ensure that interventions, innovations, and policy changes truly address their needs and deliver tangible impact. We welcome the opportunity to advise work package leaders and pilot leaders to ensure patient input and feedback are consistently integrated.
To ensure the long-term sustainability of the Joint Action, it is crucial to establish ongoing communication with the wider diabetes community, keeping them regularly informed of progress and involving diabetes associations in pilot activities where their contributions can enhance the project. Additionally, we suggest leveraging the IDF Europe network to communicate about the Joint Action and co-develop advocacy campaigns that promote policy changes based on successful pilot outcomes.
Elisabeth Dupont has been working for more than 15 years as senior project manager for the International Network for Cancer Treatment and Research, the African Cancer Registry Network and the US National Cancer Institute Center of Global Health. In 2019 she joined IDF Europe as Regional Manager. She is passionate about promoting collaboration and partnerships and putting the voice of people living with chronic conditions, including diabetes, center stage.
Learn more about IDF Europe here and connect on LinkedIn here.
Charles Agyemang: The challenge, especially with minority populations, is building trust
Some communities may seem hard to reach, but the real issue is that we don’t know how to connect with them, says Charles Agyemang, professor of Global Migration, Ethnicity and Health at the University of Amsterdam. As a member of JACARDI’s Scientific Advisory Board and an expert on ethnic inequalities in health and non-communicable diseases, he shares his experiences in working to connect with and empower minority communities. We also discussed the importance of addressing diversity in Europe and how JACARDI is leading the way.
What significance does JACARDI hold for you and your organisation in terms of its mission and values?
JACARDI is bringing a new dimension and aims to change the way things are done at the European level. The extensive network provides an excellent opportunity to interact with people, re-evaluate existing practices, and learn from other countries. It is quite exciting that JACARDI places inequalities at the center of its focus.
For me and my team, this is an opportunity to learn about what is happening across Europe and to contribute to ensuring that care and services related to cardiovascular disease are delivered equitably across Europe, taking into account people from diverse backgrounds such as migrant and ethnic minority groups.
How do you see JACARDI’s role in tackling the increasing prevalence of CVDs and diabetes in Europe?
Over the years, many countries have been working on cardiovascular diseases, but often in silos. When it comes to diversity and its various aspects, such as ethnicity and gender, many countries have been addressing these issues in their own ways and often with limited attention.
Now JACARDI provides an opportunity to raise awareness, share best practices among countries, and develop excellent ideas that can be implemented locally. It also allows countries to assess how far they have progressed, and engage with others in the process. More importantly, it ensures that countries are not working alone in silos. They have a network of people to rely on and seek input from when needed, fostering a collective responsibility to address this issue at the European level.
What is our role in promoting equity in healthcare?
Diversity cuts across the entire project, which is what makes it unique. In other words, regardless of what you are working on in your country, it is essential to apply a vested lens to it. I believe that adopting diversity as a horizontal approach should be the approach that is taken across the world.
This is the flagship element of the project. Everyone involved is expected to take it seriously and actively work on it. Having a dedicated work package focused on this ensures a constant reminder and provides a source of support for those seeking help. Some countries are more advanced in addressing these themes, and this project creates an opportunity to support countries that are less developed in their approach to diversity.
One important issue is the sustainability of the project’s results. There should be a plan and funding to enable the implementation of the diversity lens across all of Europe and ensure equitable healthcare for everyone regardless of ethnic background, gender, sexual orientation and so forth after JACARDI.
How do you see the significance of considering cultural diversity in the development of treatment for diabetes and cardiovascular disease and what is the most critical aspect of this?
The fact of the matter is that Europe today is very diverse, especially in urban centers. This is a reality, and we must address it. Diversity plays a crucial role in cardiovascular diseases, and understanding it is key to addressing inequalities in health and healthcare.
It also makes economic sense to address these gaps. For example, if we know that a specific group is affected by hypertension and we ignore this, individuals may eventually end up in the hospital with strokes, and society will bear a heavy cost of treating and caring for stroke patients. We should focus on the individuals or groups most affected and implement effective interventions to support them in living healthier lives.
Many of these inequalities are tied to social determinants of health and access to resources. For example, not everyone has the privilege of living a healthy life because of financial constraints, which may prevent them from buying healthy food. No matter how much health information you provide to specific communities, it is not going to be effective if their social and economic circumstances are not right. There must be a plan backed by resources to simultaneously promote healthy life and improve social and economic circumstances among a culturally diverse population.
Do you have any tips or valuable experiences on how to implement research findings in healthcare to benefit both the system and the patients?
It is crucial to involve the communities that matter from the very beginning of the implementation process. Their voices, especially those that are often unheard, must be included. We need to empower these communities, ensuring they are not just recipients but co-creators of the initiatives. By working together with communities from the start, we can ensure that the program is meaningful and sustainable.
Often, there is a tendency to go into communities and tell them what they should do. Instead, we should focus on ensuring that people are actively engaged in decisions, so that they take ownership of the program. When communities take ownership, they are more likely to ensure the program’s continued success after its initial implementation.
It’s crucial to recognize that long-term commitment is necessary for the success of a program. Governments must invest in supporting communities, especially those from lower economic groups and minorities, as it offers long-term benefits.
Do you have advice on how we can reach different communities?
People often say some communities are “hard to reach,” but the real issue is that we don’t know how to connect with or reach them. In fact, these communities are quite accessible if we approach them the right way and through proper channels.
The challenge, especially with minority populations, is building trust. To truly connect with people, we need to focus on establishing trust and building bridges. It’s about making people feel comfortable and valued. We need to invest time, establish relationships, and co-create with them.
Many times, researchers only engage when they need something, but we should connect even when we don’t need anything. By forming relationships and spending time with communities, it becomes easier to reach out when the need arises.
Charles Agyemang is a professor of Global Migration, Ethnicity and Health at Amsterdam University Medical Centres, University of Amsterdam. He is currently the Vice President of the EUPHA Migrant health section, Secretary of EUPHA’s Governing Board and Scientific Chair of the Global Society of Migration, Ethnicity, Race and Health. He is also a member of the prestigious US National Academy of Medicine and The European Academy. His work focuses on migration and health, particularly in relation to cardiovascular diseases. One of his most notable projects is the RODAM study, which investigates obesity and type 2 diabetes among African migrants.
Learn more about Charles Agyemang and his work here and connect on Linkedin here