Dimitra Panteli (OBS): “Understanding how policymakers work is essential to successfully transfer any scientific knowledge”

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Pictures handed

INTERVIEW

In the COVID-19 pandemic, we witnessed the constant interaction between the scientific and political worlds. While these realities are interrelated and interdependent, they have not always been able to reach consensus on the best ways to improve our health. In the face of today’s major health challenges (climate change, antimicrobial resistance, rising cancer rates, etc.), it is imperative that both communities work together for addressing the mentioned challenges. 

Precisely one entity that builds bridges between these groups is the European Observatory on Health Systems and Policies (OBS), which has been celebrating its 25th anniversary in 2023. With the elections for the European Parliament around the corner, Dimitra Panteli and Florian Tille, both from OBS, tell us about how they interact with the political sphere when transferring scientific knowledge and what the most innovative trends in health are, among other things. 

Both Panteli and Tille work on evidence-informed health policy and health care, focusing on the Observatory’s work pillar on innovation and its links to Health System Performance Assessment (Panteli) and cancer (Tille).  

The Observatory is celebrating its 25th anniversary this year. What are the general insights of the organisation after so much time supporting and promoting scientific evidence to European health policymakers? 

Dimitra Panteli: The first thing is the vast potential to learn from each other, that’s the whole point of the Observatory. The successes and failures that countries and organisations have had in trying to reform their health systems are lessons that can help others to improve and strengthen theirs.  

Second, health systems are very complex: you may have ideas about how to change them, but whether you succeed depends on many factors, such as a good understanding of the systems or involving all the appropriate actors in the change process.  

And third, health systems do not operate in a vacuum, but in an overall context, with other types of pressures to which they must be resilient. And these pressures are not always foreseeable and may come from outside the system, as we have seen with the COVID-19 pandemic or financial crisis. 

Florian Tille: Context is indeed essential. Even if there is shared learning among systems, countries or regions, ultimately problems or challenges need to be specified and options for solutions tailored to the different places where you are trying to tackle these challenges. This dependency on the context is relevant for the provision of health services, for example. 

What progress has been made in cross-border learning between EU Member States?

Dimitra Panteli: Obviously a lot, otherwise 25 years of Observatory efforts would have gone to waste! The European Union itself, with all its support for collaborative projects such as eCAN, is clearly moving in this direction. Proof of this is that its continued investment in this area has led to the emergence of various networks, initiatives and exchange platforms for boosting knowledge exchange across countries. 

Initiatives such as Transforming Health and Care Systems Partnership (THCS) are trying to strengthen that collaboration by identifying what we need to look at and then promoting a common analysis. 

Florian Tille: And if we talk specifically about cancer, the project ECHoS is also committed to create a European Network of Cancer Mission Hubs (NCMHs) that operates at national, regional and local levels. The Observatory is a key partner in this as we facilitate policy dialogues with the Mission Hubs. 

Does the Observatory have any examples of such networks of its own?

Dimitra Panteli: We count on the Health Systems and Policy Monitor Network (HSPM). The knowledge of our experts is channelled through the HSPM platform, which provides detailed descriptions of health systems and up-to-date information on reforms and changes that are of particular policy relevance. This network, for example, was crucial during the pandemic as it provided information on how countries’ health systems responded to the COVID-19 between 2020 and early 2022 and the inputs to the COVID-19 Health System Response Monitor (HSRM).  

The main gap between scientists and policymakers is the way information is presented and made accessible.

You mentioned earlier that it is important to involve the right actors. How do you get policymakers to listen to the evidence?

Dimitra Panteli: The main gap between scientists and policymakers is the way information is presented and made accessible. We often have good scientific studies on policy measures that are methodologically complicated or present their findings in a format without the “so what?” message that indicates their importance for legislators’ work. Therefore, there is a need for translation from scientific facts to feasible policy actions.   

Really understanding how policymakers work, in terms of their needs and their own ways of operating, is a key ingredient for successfully transferring any insights from science to the political sphere. This is why the Observatory has both short-written formats and face to face formats, such as policy dialogues, to approach policymakers. 

Florian Tille: The information overload we all face implies that we have to be much more specific, concise, and really intentional in our messaging. Not to mention that sometimes it is not the policymaker who works with our messages in the first place, but their closest advisor, so information is likely to pass from person to person. That’s also why the materials we develop have evolved in terms of framing and format: more multimedia, more compact formats, greater social media presence, etc. 

Apart from the collaborative approach, what trends or innovations in healthcare are you currently observing in Europe? 

Dimitra Panteli: I like to divide them into three categories, although they’re interrelated: there is the biomedical or technological innovation and then we also have the organisational innovation, which includes all the different models of care, for example. 

There is a lot going on at the moment, so it’s hard to single things out – but perhaps we can provide some examples. In the first group, we have elements like artificial intelligence (AI) and health applications, with all the challenges that come with them: data privacy, cybersecurity, digital literacy, inequalities, etc. In the second group, we have the efforts done to deliver a closer care to patients without the need of visiting medical centres, such as “hospital at home”.  

Of course, all this innovation means that professionals need to acquire new skills and we need to ensure that we can incorporate the innovations that really benefit patients in a way that is sustainable for the future.   

Florian Tille: We also see innovation in long-term care. We’re just finalising a book on that topic. In one chapter we’ve taken a close look at the trend of more private providers entering this area (of long-term care), and what this implies for service delivery, costs, and most importantly, for the people receiving care, their families, and the workforce.  

In the specific field of cancer, we are looking at the whole continuum of cancer care and research, focusing for example on things like survivorship and the ‘right to be forgotten’ for cancer survivors. 

How is the process of consulting and selecting the scientific evidence and what types of sources do you use?  

Florian Tille: In the Observatory, we do secondary data analysis, which means we consult the scientific knowledge that is in recent literature, and then we try to gather it to do our work. Always from an international or EU perspective. 

And of course, we’re constantly talking to experts in different countries about what’s new, to get additional insights that might not be apparent from the literature at first glance. These networks are also useful when we need to respond quickly to requests from countries on different health topics that emerge all of a sudden. 

Dimitra Panteli: Talking about quick responses, for example, a few years ago one European country asked us for help. They wanted to expand their dental coverage because they realised that their population had significant oral health problems. So, they asked what other countries had done to expand their basket of services in this area. 

Behind these rapid responses, there’s a whole series of observations and country-by-country monitoring that tells us how health systems are evolving and performing and evolving, and then we can provide benchmarks by comparing them.

Policy dialogues, journals, webinars… the Observatory has many tools at its disposal to ensure that its message reaches policymakers. Which ones work best? Is there a need to develop other formats in the future?

Dimitra Panteli: They all have their uses! In general, if you look at the evolution of these formats, you’ll see that we used to do more long studies, and now we tend to use shorter formats like our policy briefs. As a technical advisor you should be able to highlight the key points that are needed in a simple way. To disseminate our written formats, we rely heavily on social media and try to present our points in different ways. 

In the audiovisual format, we are also opting for short messages, although we are still experimenting and evaluating their use. We have suggestions for podcasts as well, but nothing concrete yet.

There are European elections next year. What do you expect from them in terms of health policies? Will there be specific health issues or challenges that, in your opinion, will set the tone for the next four years?

Florian Tille: The most immediate thing I can think of is the European Health Union (EHU), which is a very broad topic obviously, also pandemic preparedness and response and pharmaceutical pricing policies.  

Dimitra Panteli: In fact, the European Commission has asked the Observatory to support with a public consultation on in which direction the health priorities should be moving forward. During the European Health Forum Gastein (EHFG) and the European Public Health Conference, the Observatory organised sessions about the future health priorities of the EU: such as strengthening and supporting the workforce, addressing the determinants of health, climate change and the sustainability of the health delivery system or the implementation of digital solutions and AI, to name a few. We will have additional webinars in January 2024 on these issues to engage with those who are interested. We will also continue working on topics from the current cycle as well, like the European Health Data Space (EHDS), for example. 

EU projects must take advantage of windows of opportunity, because if they are not aligned with the political agenda, they will have a hard time achieving their objectives or generating impactful messages, no matter how good they are.

And one last thing that I think is important to mention, is that following the COVID-19 pandemic, there might be resistance to continue to focus and prioritise health over everything else when we have other areas that could use that money too. We already saw in this year’s State of the Union speech, is that there was very little discourse about health, so we need to keep making the case for investing in this area

There are several European projects, such as eCAN, that aim to produce general recommendations to help countries implement measures in certain health areas. How do you assess the interaction of these projects with the political spheres? 

Dimitra Panteli: European projects are clearly moving towards a better understanding of the importance of communication and finding a way for their results to somehow land where they’re supposed to.   

They must take advantage of windows of opportunity, because if they are not aligned with the political agenda, they will have a hard time achieving their objectives or generating impactful messages, no matter how good they are. eCAN is an example of how to take advantage of these windows, as it addresses two current key issues: digital health and cancer. 

Florian Tille: Especially when it comes to disseminating and communicating key messages, it is absolutely essential to have a plan for the sustainability of the project and how your messages and findings will contribute to a meaningful change over time, because this is why the project has been commissioned in the first place. You have to think about how to promote the long-term impact of the initiative. 

Andreas Charalambous (ECO): “The health workforce is not well prepared for a digitalised healthcare system”

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INTERVIEW

Digital transition is inevitable and necessary for healthcare systems if they do not want to be left behind. Population’s digital skills are usually in the spotlight of the debate, but less often healthcare professionals’ digital abilities are discussed. Andreas Charalambous, president of the European Cancer Organisation (ECO) and an expert in oncology nursing, talks to us about health workforce’s challenges in digital transition and technology-based interventions for cancer care. 

Question: We know that health literacy and digital health literacy contributes to improve people’s quality of life. How can healthcare professionals’ level of digital health literacy affect the healthcare system and patients’ lives?   

Answer: Having digital health literacy skills means possessing the ability to properly understand and use medical information to influence decision-making on health issues. Digital health literacy is one of the main reasons that explains why digital health cannot reach its full potential in our days. We’re living in a digital age where health information does not only come from medical centres and professionals, but also from the Internet, specific health apps, etc. It is essential that individuals hold the ability to critically assess this information, since the way they will choose to use it might impact their lives. 

When levels of digital health literacy are low among population, users cannot fully exploit the resources around them to influence their decision-making process and harness the opportunities technology offers. The same happens with healthcare professionals. Developing these skills allows the health workforce to use available information and technology to its full scope. In general, levels of digital health literacy in Europe are far from the desired levels. People need to be able to manage all this information and it is critical to increase digital health literacy skills for this purpose. 

We’ve mapped the existing digital training programmes for healthcare professionals across 14 EU member states and, for example, only 4.2% of these programmes address cancer care.

One priority at the European level is to improve and implement a digitalised healthcare system. Are healthcare professionals prepared or trained to assume a European digitalised healthcare system? 

It is fantastic that the European Commission is committed to digital transition, but I’m pretty much confident that the health workforce is not well prepared for a digitalised healthcare system. In a EU project that I coordinate, TRANSiTION, we aim to build healthcare professionals’ digital skills. We’ve mapped the existing digital training programmes for healthcare professionals across 14 EU member states and, for example, only 4.2% of these programmes address cancer care. That means there is a lot to be done to better prepare the workforce, build digital competences and make them master this digital transition. Definitely, we are not there yet.  

Are digital health literacy skills akin among the workforce across Europe?  

There are inequalities when it comes to digital skills among the workforce in Europe. There are countries without digital skills training programmes at all, and I do think this is unacceptable. Without these training programmes being in place, workforce cannot learn basic digital skills and will not be able to uptake more complex tasks. For example, you cannot operate AI machine learning or advanced digital image diagnosis. We need to start from the basic, and then move on from there. 

Do you think there are examples of good practices that can be a touchstone to look at?

We have been looking at the Digital Skills Gap Index (DGPI), that identifies and evaluates the factors that underpin the pillars of digital strength, resilience, and responsiveness in different countries and sectors. In Europe, Scandinavian countries, along with The Netherlands and Germany show better performance than some other Southern European countries, such as Greece, Croatia, Slovakia and Hungary.  

In all these countries, the presence of institutions that upgrade digital skills, the responsiveness of the educational system and economy and the governmental support they get remain key aspects to improve digital skills among professionals.  

At the high-level meeting for cancer prevention and care held in Barcelona in September, you stated that “we need to emphasise and work within the spectrum of multidisciplinary and multiprofessional teams to address cancer care”. Which kind of professionals should be part of this multidisciplinary approach towards cancer care? 

A multidisciplinary team consists of medical specialists and other professionals that contributes to fully address what the patient requires. The needs of the patient are very dynamic, and they evolve from diagnosis to treatment, after treatment, as survivors, etc. In this sense, the composition of the team should also change and reflect the needs of the patient, starting with medical oncologists, radiation oncologists, cancer nurses, physiotherapists, nutritionists, occupational therapists and so on. Then you can add other professionals to cover the social aspects and spiritual needs of the patient. 

I do think that people developing these apps have understood the important role informal caregivers play in the continuation of care at home and the empowerment they can place into the patients.

In one of your latest publications as an editor (Informal Caregivers: From Hidden Heroes to Integral Part of Care), there is a chapter about the use of information and communication technology by informal caregivers. Can this technology help caregivers to improve their performance? How?

Cancer is, by definition, a social disease. In this context, it is never, and it has never been only the patient on the receiving end. It is always the patient and plus. That plus is usually a caregiver that used to be a family member, but nowadays they can be significant others who are not relatives. Caregivers usually work in groups of two or more and when a patient i trained to use a telemonitoring application for home, such as the eCAN pilot projects, then the informal caregiver is trained to use the app as well. It is becoming much more frequent to include patients and caregivers’ views in these apps. I do think that people developing these apps have understood the important role informal caregivers play in the continuation of care at home and the empowerment they can place into the patients. They become more confident to use this technology.  

As healthcare systems acknowledge the essential role of caregivers and how technology can help them to better care for their loved ones, it is becoming more evident that caregivers also need to have the digital health literacy skills. We shouldn’t forget that the caregiver should receive training as well. 

Can you develop a bit more the concept of cancer as a social disease?

When you have a heart disease, it is basically you who experience the impact and manifestation of this disease. But when you have cancer, it affects you, your immediate family, your community. The impact of cancer is greater compared to other diseases. Cancer is unique because suffering or experiencing the manifestations of cancer is not confined within the person, it touches the people next to you. That is why we call it a social disease. By no means cancer cannot happen in a social vacuum, the person almost never experiences it alone, and for some reason cancer collects around the person a supportive network, not only immediate family but also significant others.  

You have also researched the effects on anxiety and quality of life of breast cancer patients. Taking your results into account, in which ways could technology-based interventions help patients to improve their quality of life?

Depending on the context in which these technologies are applied, there are many ways that can contribute to improve patients’ lives. We have used virtual reality in patients that undergo different kinds of chemotherapy in the day hospital units. They are sitting in a chair for a considerable amount of time, so virtual reality was used as a distraction technique that took the patients away from the stressful environment of the daily unit, from the actual chemotherapy dripping into their bodies. Virtual reality broke their stressful routine of receiving treatment by engaging the patient in a relaxing and interactive environment that patients could enjoy without moving from the chair, through teleporting.  

We have also used other methods, such as progressive muscle relaxation and guided imagery scripts that also worked, and we did this in the patients’ environment, so they learn how to do it themselves. We empowered the patient to do it.  

As you know, our pilot projects are trying to identify the differences between implementing technology-based interventions and face-to-face interventions in cancer care. Do you think this study can contribute to the research field?

One of the pilots is here in Cyprus, by applying the eCAN project in clinical practice we will be able to demonstrate if technology-based training is as efficient, lower or superior to face-to-face training. I do think that the results coming out for eCAN will contribute to the body of evidence in the field.

Michele Calabrò (EUREGHA): “If national and local approaches in health are not contemplated enough, we may lose some nuances”

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Michele Calabrò, Director of the European Regional and Local Health Authorities (EUREGHA)

INTERVIEW

Despite the complex global health challenges, European citizens consistently express the need for a healthcare system that is accessible, closer and responsive to their specific needs. Decisions made at the national or international level often fail to fully consider their unique situations and experiences, so it is crucial to assert the role of local and regional authorities when shaping the health agenda across the continent. 

One of the advocates of this perspective is Michele Calabrò, Director of the European Regional and Local Health Authorities (EUREGHA) with more than 8 years of experience in EU health policy, projects and communication. The organisation he leads ensures that the local and regional perspective is represented in EU health policy. 

Question: How are you measuring your progress on achieving EUREGHA’s objectives?  

Answer: Beyond key performance indicators or numerical information, the real impact for us comes from our engagement with European institutions and other stakeholders and to what extent do we listen and represent the voices of the local and regional health authorities’ that are part of EUREGHA.  

Lately, more and more organisations have been partnering with us in multi-stakeholders’ initiatives and, of course, this is a good sign. In line with that, our communication activities are also working particularly well in social media. 

Any success story that is particularly relevant or representative of the organisation’s work? 

Last year we did a joint conference with the WHO Regions for Health Network (RHN) that, I think, testifies the work that we are doing to include the regions when designing resilient and connected health systems for the future. 

Another example is that we have a strong connection with the European Committee of the Regions (CoR), since we run the Secretariat of the Interregional Group on Health and Well-being. In there, we debate and share viewpoints on EU policy issues related to healthcare and public health. We also take part in the European Week of Regions and Cities, which gives us a good exposure. 

Finally, an important milestone worth mentioning is the recent Memorandum of Understanding signed with EIT Health, which will pave the way for further collaboration on topics such as the European Health Data Space (EHDS) and more.  

Is it difficult to equate or match national and regional/legal approaches regarding health policies? 

There is no easy answer because we have Member States with a significant number of regions and, on the other hand, some composed by just a few of them. The implementation of telemedicine, for example, also differs whether you are in urban or rural areas. Besides, not all these regions have the same competences particularly talking about healthcare, so there is not a unique way to achieve the balance between the national and the regional/local dimensions. 

The important thing is that both approaches should always be considered. While the national level is usually the direct link with policies because of how entities work, at the end, the regions are responsible, in many settings, of implementing them in an effective way more often than we think. If both levels are not contemplated enough, there is a risk of losing some nuances and specific needs. 

“While the national level is usually the direct link with policies because of how entities work, at the end, the regions are responsible, in many settings, of implementing them in an effective way”

Would you say that the local and regional perspective is at a disadvantage compared to the national perspective? 

I would not define it as a disadvantage, but sometimes we need to remind the stakeholders at a national and European level that this perspective also exists and plays a fundamental role. EUREGHA not only represents the regional and local perspective, but also fosters the discussions between all these actors that are part of it so that they are more and more taken into central consideration. 

And what about the differences between local and regional contexts within the same country? Do they represent a bigger challenge? 

The challenge is always there because there are no single solutions or policies that can be adopted by all territories, let alone if all the dimensions we are talking about are to be considered. 

However, diversity is, at the same time, an opportunity. All the challenges we face (ageing population, digital transformation, etc.) are common and therefore everyone is asking the same questions, even if there are different ways of addressing them.  

You have mentioned on occasion that we are moving towards a European Health Union (EHU). How close are we to achieving this? 

Healthcare has never been higher in the EU agenda as it is now, so we are focusing more on cohesion, harmonisation and common goals as we move towards the EHU. The challenge is to keep this topic high in the agenda and to prevent backward steps in this direction with the upcoming EU mandates. 

At first, this concept arose as a response to health crisis, but nowadays we have adopted a proactive/preventive approach. The European Beating Cancer Plan (EBCP) or the European Health Data Space (EHDS) are examples of this new attitude.  

“Diversity is an opportunity. All the challenges we face are common and therefore everyone is asking the same questions, even if there are different ways of addressing them”

eHealth plays an important role in the roadmap towards the EHU. What challenges are generally faced by projects like eCAN, that are committed to foster digital health? 

These projects are developed in a constantly changing environment of policies and regulations, so it is difficult for them to deliver innovation that does not get outdated by the time they are finished. 

Moreover, the results of these initiatives need to be translated into practical approaches suitable for all the EU, which is also complex, especially in those territories that do not participate in them and are not always reflected in the outtakes. 

Finally, they also involve a lot of actors and entities with active roles, so they need to overcome their combined weaknesses (health workforce shortages, lack of skills, different priorities…) to move the project forward. Digital health is a very wide concept, so these initiatives should work together or create synergies more often to ensure effective progress in this regard. 

What are EUREGHA’s contributions to tackle cancer? 

In particular through the activities of our dedicated cancer Working Group, we strive to give inputs to policy initiatives and participate in actions and projects as proactively as possible, while also encouraging the exchange of practices and information between regions that take action to tackle cancer. Furthermore, we are in regular contact with key stakeholders such as the European Cancer Organisation or cancer patients’ organisations. 

The organisation plans to become an eCAN observer in the near future. Do you have any actions in place for when this happens?  

We would like to give you the opportunity to present the results of the project at one of our Working group meetings and help you to disseminate them through our channels. And, of course, as observers, we can provide input and help when necessary to contribute to the progress of eCAN. 

David Novillo (WHO): “Innovation is always ahead of legislation, and that’s an important challenge in digital health”

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David Novillo (World Health Organisation)

INTERVIEW

“Digital health tools are more commonly used in urban areas, among young individuals with white ethnic origins, English speakers, those with higher levels of education, and individuals with higher economic status”.

The question on how digitalisation can be effectively used for improving public healthcare is not new and has been tackled thousand times by those who are in charge of making it possible. Much less often, policymakers have been able to provide answers that can actually be translated into real actions, because innovation means “new”, and all new things require practice and failure in order to success.  

David Novillo, data and digital health unit head and regional adviser at the World Health Organisation (WHO) in the European Region, is one of these people that tries to shed light into digital health, the future of healthcare systems and the challenges all EU region countries should address in order to do better. 

Question: What do we understand by digital health in the present days? 

Answer: To put it simply, digital health is all about using digital technologies to make people healthier. Initially, it was called health informatics, telemedicine, eHealth or digital health. However, now we talk about digital transformation in health. This shift in terminology makes it harder to explain what exactly we mean when we say “digital health.” But in a nutshell, it refers to using digital technologies on a large scale to improve people’s health. 

And what does digital health aim to become?   

In the past, we used terms like eGovernment and eHealth, where the ‘e’ represented the use of digital technologies.  But in the future, the ‘e’ will no longer be necessary. It will become commonplace to talk about providing health services with the support of digital solutions without explicitly mentioning how these services are provided. 

What are the main technical and ethical challenges in the European Region to implement digital health in national healthcare systems? 

We face several specific challenges when it comes to digital health. One of them is that decision makers have different interpretations of what digital health actually means.  

While I may have a broad understanding, a Minister of Health may view it only as electronic record-keeping. This different understanding is a challenge because our limited time for productive discussions on digital health is often spent clarifying the concept itself. And although digital health is mentioned in policymakers’ speeches, the actual investments made do not always reflect this.  

The second challenge is the lack of long-term vision and consistent funding for digital health. It’s crucial for us to invest in this field and have a forward-thinking perspective, as implementing technology in the healthcare sector typically requires at least 5 to 10 years. This can be difficult for governments, who are typically in power for shorter terms of around five or six years. 

In addition, before focusing on digital infrastructure, countries need to establish governance, legislation, and policies. We sometimes overlook the fact that it is more important to have robust mechanisms for governance, legal frameworks, and policies in place before implementing digital solutions, rather than just having connectivity, computers, or interoperability. We need to ensure the secure transmission of data and protect the rights of patients and doctors, through proper laws because innovation is always ahead of legislation, and that’s an important challenge in digital health.  

What about the other two challenges?  

The fourth challenge we encounter is the lack of data to make informed decisions regarding digital health. Many countries are investing heavily in digital solutions, but we should ask ourselves: what data are these investments based on? Are epidemiological data indicating a need for these digital solutions? From my perspective, we should first identify our needs and then implement digital solutions that help address specific barriers and problems. It is crucial that every decision is supported by data rather than relying on intuition or a sense that something will work. The final challenge is the insufficient involvement of end users—such as patients and health workers—in the design of digital health solutions. We saw this during the Covid-19 pandemic, where numerous apps were developed worldwide but not all of them were successful. The success of some of these experiences can be attributed to the active involvement of end users. Surprisingly, even in 2023, this remains a challenge.  

Including end users is not only a practical matter but also an ethical one. We must prioritize the protection of patients at all costs. During the pandemic, we saw some challenges concerning the use of contact tracing apps, as they were sometimes used to monitor populations in ways that raised ethical concerns. While this may not have been widespread, it shows the importance of ethical practices and the need for careful consideration in the use of these technologies. 

In the present days, how is digital health translated into patients’ daily care? 

There are many practical ways in which digital solutions are directly impacting patients’ lives. First, there is improved access to health information. Through digitalization, patients can now access and utilize health information, empowering themselves to make informed decisions about their health. 

Second, we have seen a wider use of devices to collect data, sending it to health providers for analysis and monitoring.   

At the same time, digital tools have facilitated follow-up consultations. Patients can now have medical appointments with their doctors remotely, using digital solutions. This eliminates the need for physical visits and allows for more convenient and efficient healthcare access. 

Another notable development is the introduction of ‘ePrescriptions’. Patients now have access to electronic records, and they can go directly to the pharmacy to pick up their prescribed medications without the requirement of visiting primary health facilities solely to collect a paper prescription. This streamlined process has a significant impact on patients by reducing unnecessary steps and improving convenience.  

Sometimes we don’t want to talk about regulations and instead want to end to focus on exciting innovations like Chat GPT and other technological advancements. But we need to conduct a reality check, especially in rural and remote areas, where basic healthcare needs must be addressed rather than solely focusing on cutting-edge innovations.

What do you think EU countries should prioritize in order to integrate digital health in their health care systems? 

Undoubtedly, one of the key elements needed in digital health is appropriate legislation and regulation. While technology and governance can be implemented, regulations are often time-consuming and expensive to develop.   

In my personal experience, I have encountered situations where we were assisting a country in digitizing health records, only to discover that the existing laws explicitly protected “paper-based” records.  

Sometimes we don’t want to talk about regulations and instead want to end to focus on exciting innovations like Chat GPT and other technological advancements. But we need to conduct a reality check, especially in rural and remote areas, where basic healthcare needs must be addressed rather than solely focusing on cutting-edge innovations. Ensuring that legislation and regulation align with the digitalization of health services is crucial for effective implementation and protection of patient data.  

Now that you’ve mentioned remote and rural areas, I would like to talk about inequalities. Is there a roadmap that we can follow in order to guarantee equal access to digital tools? What are the core principles of it? 

First, it’s important to acknowledge that the Covid-19 pandemic has accelerated the digitalisation of society, which is one of the few positive outcomes we’ve witnessed. However, we must also recognize that approximately 34% of the global population still lacks access to the internet, with only 45% of people in developing countries having internet connectivity. 

Recently, WHO published a report on digital solutions and inequalities. Our findings consistently show that digital health tools are more commonly used in urban areas, among young individuals with white ethnic origins, English speakers, those with higher levels of education, and individuals with higher economic status.  

To address these disparities, it is crucial that we gather evidence on effective ways to improve knowledge, skills, and confidence in using digital health technologies among those who need them the most.  We also need to understand how factors such as socioeconomic status and ethnic origin intersect and contribute to these disparities. How are these features interrelated and what is the real picture at the global level? How are we going to use inclusive and participatory designing approaches? When we involve people in the design of these digital solutions, we are actually contributing to closing the gap in health inequalities. 

The Regional digital health action plan for the WHO European Region 2023–2030 and eCAN share the goal of strengthening digital health in healthcare systems. What are the main strategies from the regional plan that eCAN can look at for its project? 

In our action plan, we have identified four strategic objectives that guide our efforts.  

The first one is about setting norms and providing technical guidance. It is crucial for us to create documents that provide concrete advice to member states on digital health. The second objective focuses on supporting countries directly and promoting digital health literacy. This involves supporting countries in developing or improving their digital health policies, or at least ensuring that a digital health component is part of an overall national health policy or strategy. We also strive to enhance digital literacy skills among patients and health workers. 

The third objective is all about networking and sharing knowledge.  In this era in which costs can be high, we need to be more open about what is not working, so that countries can learn from one another and learn from previous mistakes. 

In addition, at WHO we emphasize the collaboration between the public and private sectors. In this field, progress is nearly impossible without the involvement of the private sector. The government and public sector should define their needs, and the private sector should provide the necessary solutions, and not the other way around.  

Finally, we prioritize horizon scanning and scaling up successful initiatives. We identify what works well in certain countries and aim to replicate those experiences in other countries, expanding the positive impact of digital health solutions. 

eCAN will conduct three pilot projects for studying telemedicine and teleconsultation in cancer patients. How can these pilots become an example to look at when it comes to developing future action plans? 

When undertaking pilot projects, it’s crucial to involve users, learn from previous experiences, and have open discussions about successes and lessons learnt.  

Then, when you have all that, it’s important to document the project, which is something we often overlook. When we document pilot projects, we can share the positive outcomes with others and explain what didn’t work so well. I’m sure that we can take inspiration from this project and apply them to other countries in the future. 

Wendy Yared (ECL): “Not all cancers are inevitable, and we need to encourage everyone to understand it”

Wendy Yared at the Conference on cancer of the Swedish Presidency of the Council of the EU

INTERVIEW

There are high expectations that digital tools can contribute to a lower incidence of cancer, although we are still testing and evaluating many of them. What is certain, however, is that technology will not be enough if we do not change our lifestyle habits. We have already heard this with climate change, with the energy crisis, with our consumption patterns… and cancer is no stranger to this.

This idea is also advocated, among others, by Wendy Yared, Director of the Association of European Cancer Leagues (ECL) with more than 25 years of experience in public health and health policy. The organisation she leads brings together national and regional cancer societies that cooperate and exchange information to curb the impact of cancer at European level.

Question: In Europe, we are making great efforts to reduce the incidence of cancer, but how can we do even more?

Answer: We need to put more emphasis on cancer prevention so that we can save more lives. I am always surprised that many people are still not aware that up to 50% of all cancers are preventable. This means that not all cancers are inevitable, and we need to encourage everyone to understand it.

Why have not we paid more attention to prevention until now?

Only 3%, or even less, of health budgets are devoted to prevention. And I am not just talking about cancer prevention, but about prevention in general. When there are few resources and attention, there are not enough actions to reduce the incidence of these diseases.

Moreover, cancer takes decades to develop, so if there is a current improvement in its incidence, it is due to the efforts that were made decades ago. Maybe what we are doing now is very good and sufficient, but we will not be able to see numbers improve significantly for another twenty or thirty years. The good news is that now, at the EU level, there is a lot more attention towards cancer control and policymakers are being convinced about of its importance.

Considering the available data about the growing incidence of cancer, how is ECL looking at the future?

First, it is important to know how reliable the data and the sources are, but it is certain that the ageing of Europeans plays an important role. For our part, we are trying to maintain cancer high on the EU agenda, because this has not always been the case.

We must be patient, but there are reasons for hope, such as increased budgets for cancer control and a bigger awareness in Europe. I am confident that we will see a decrease in cancer incidence soon, especially with the increased EU support in recent years.

“I am confident that we will see a decrease in cancer incidence soon, especially with the increased EU support in recent years”.

Nowadays, it is known that our habits and the risk of suffering cancer are linked. Why is it so difficult to raise awareness of this idea among people?

Each risk factor responds to specific behaviours and, as a result, there are different challenges in each of them. For some risk factors, such as tobacco use, we have more information on why it is so hard to modify our habits, but we also know actions that work, such as taxation. If there are high prices, it will be more difficult for people, especially youth, to get hooked.

Cancer leagues need the support of governments to improve policies and raise awareness, considering that we do our best with fewer resources than industry, which widely promotes its unhealthy products (tobacco, alcohol, sugary drinks, sunbeds, etc.).

How can we convince them to lead healthier lifestyles?

The International Agency for Research on Cancer (IARC) is now in the process of updating the European Code Against Cancer. They are evaluating what works and what does not in each cancer area while considering the most updated evidence. It is important to keep renewing the messages regularly so that people are reminded of them. And finally, as mentioned before, it is important to have policies that encourage citizens to make the healthiest choices.

Can you give us some insight into the upcoming fifth version of the European Code Against Cancer and how do you plan to increase its dissemination?

There will likely be new recommendations that will be added to the current fourth edition.  Discussions are ongoing to align with current evidence, such as including boys for the Human Papilloma Virus (HPV) vaccinations.

Regarding the dissemination, we will continue to engage the member leagues of the ECL and other partner international organisations to spread the word about the ECAC, since they have direct contact with patients and civil society.

The ECAC and other initiatives focus on what we can do as individuals to reduce cancer risks, but do we ask the same commitment from producers (alcohol and tobacco companies, food industry…)?

We can ask but I have little confidence that they will have any significant level of commitment. While some companies may show that they try to make a difference, not all of them do what they promise. It is simple: it is not their job and they want to sell and make a profit. We have different priorities and that forces us to seek a balance between all the actors involved.

If producers truly wish to help, they could give a portion of their profit to support healthcare systems, because if they are going to make people sick, at least help them get better too.

“While some companies may show that they try to make a difference to reduce cancer incidence, not all of them do what they promise. It is simple: it is not their job and they want to sell and make a profit”.

In terms of digital tools for cancer care, it is very common to mention mobile apps, but can you give other examples of these tools? Is there one that stands out above the rest?

When we talk about digital tools, we also include smartwatches, the Internet of Things, robotic surgery, pathologists… but none of them stand out among the other tools for now. We have to wait for the results that all of them are promising and bringing. The internet and websites, if we count them as digital tools, are the most promising because of their accessibility, durability and reach.

How can digital tools help us to deliver cancer services more efficiently and reduce existing gaps?

The patient must be well-informed to be able to choose which option he or she prefers and to have flexibility in this regard. Beyond highlighting the benefits of these tools, such as reduced travel time and the guarantee that the doctor is always there, even if not physically, what is really important is to give the patient the possibility to choose between virtual or face-to-face care for their particular needs.

What are the barriers that healthcare professionals need to overcome?

The pandemic has shown that there is a new way of working in healthcare and has helped professionals change their mind-set on the value of digital health. Not everyone was trained with these technologies when they were studying, like surgeons, for example, so their learning curve has been steep and fast. They also have had to learn how to talk to patients through the screen when there are difficult things to tell. Professionals need to be convinced that this adaptation can be useful to them and make their work easier.

And regarding the management of health information?

Hospitals use different systems to manage their data, so harmonisation of information and platforms across healthcare institutions remains a challenge. We need to ensure that these systems are interoperable within and across our borders.

Patients can be nervous about sharing their data, because sensitive information can be grounds for discrimination if it gets out or is leaked, so these systems need to be secure and the patient needs to be assured of the confidentiality of their information.

What added value can eCAN bring in the context of digital tools?

eCAN aims to put on the table some recommendations on teleconsultation and telemonitoring at European level, which I believe is vital to clear up doubts and ensure that everyone interprets the regulations in a harmonised way. But for this to happen, it is first necessary to raise awareness among policymakers, which is also what eCAN is trying to do.

Why do we have healthcare systems if we don’t include patients in the policy-making process?

OECD representatives: Caroline Berchet and Candan Kendir

INTERVIEW

Candan Kendir (OECD): “Who can know better than people who have first-hand experience with healthcare about how to improve the delivery of health systems for better outcomes and experiences?” 

Caroline Berchet (OECD): “There are large inequalities in access to technologies […] Policymakers should ensure that all people can use and access to health technology. Digital health literacy is key”.

Could you imagine being the main character of a theatre play but being ignored by all actors and actresses during the whole performance? That is exactly what happens when the patients’ voices and visions are not included in the policy making processes that have an impact on healthcare delivery.

The Organisation for Economic Co-Operation and Development (OECD) knows the importance of considering what patients have to say for improving the design of healthcare policies and policies themselves. Candan Kendir (Health Policy Analyst, OECD) and Caroline Berchet (Health Economist, OECD) see the need of changing the way policies have been elaborated so far and have shared their vision and insights with the eCAN project in that respect.

Question: Latest cancer prevention and care policies include patients’ voices in the policy-making process. Why is this approach taken?   

Candan Kendir: Patients and caregivers can provide their experience and knowledge to health policy making and research. In the end, the ultimate goal of healthcare is to provide care to people. And keeping that in mind, who can know better than people who have first-hand experience with healthcare about how to improve the delivery of health systems for better outcomes and experiences?   

However, bringing patients’ perspective into policy making is still very rare across countries. For instance, an OECD work published in 2021 to evaluate patients-centredness in healthcare systems found that only 11% of the participating countries included patients’ voices in key policy-making areas.   

When did policymakers start to take a people-centred approach for improving the health systems’ quality in Europe? 

Candan Kendir: We cannot talk about a milestone event which leads to all these conversations, but we know that years ago this was not even part of the discussion. It was when several international organisations and associations started having patients in their councils or in their advisory bodies that a patients-centredness approach emerged. All that led to now have patients sat in advisory bodies or working groups in Health Ministries. 

Are there any national or regional examples that we can consider touchstones to base future work on?   

Candan Kendir: There are a few good examples across Europe. However, it is not only about including or engaging patients in policy making, but also about how to do it. We need to agree on when they are needed and which level of implication they will have, because they cannot be everywhere; they have limited resources, time and capacity.   

When I think about good examples in Europe there are two countries that come to my mind immediately. One of them is Czech Republic. In 2018, they established a Patients Council consisting of patients’ organisations that works in collaboration with Patient Rights’ Units in the Ministry of Health. Basically, each time there is a new area of work in the Ministry of Health, patient rights’ units think about the kind of involvement patients can have in the issue. These groups gather very regularly, and they also meet with the Ministry of Health once a year, if I’m correct.   

What about the second country? 

Candan Kendir: Another example is in the Netherlands, at the Netherlands Institute for Health Services Research (NIVEL). They created a council of people with over 11,000 members. NIVEL consults this group regularly for key policy areas that the Ministry of Health is working on, based on the topics and the interest they are forming new subgroups from this council and agree which topics they will address, their role, their involvement during the process…I’m pretty sure there are many examples such as those, in Europe and outside of Europe.

The OECD has launched the Patient-Reported Indicator Surveys (PaRIS) initiative in 2018. These surveys included patients and healthcare providers in the designing process. How is the patients’ attitude towards this new approach of a people-centred health system? 

Candan Kendir: We have a very engaged groups of patients and providers in the PaRIS initiative, because the initial proposal came from a bottom-up initiative of a task force, integrated by patient representatives, patient organisations, and primary care provider organisations as well. These people worked together on the study, design and development of the PaRIS Survey. After that, in 2018, we convened a Patients Advisory Panel, with whom we have regular contact. It has been 5 years since we have this patient panel, and I can say that these 10 patient organisations are still engaged. They participated in all steps of the designing and development process, and that was key for their engagement.   

“On our end, people-centred approach requires a lot of time and resources. On the patients’ end, because most of times they are not paid for these kinds of activities, they need to use their own budget or resources”.

Which are the main challenges about including the patients’ voice in the policy making process?   

Candan Kendir: On our end, people-centred approach requires a lot of time and resources. On the patients’ end, because most of times they are not paid for these kinds of activities, they need to use their own budget or resources. Another challenge is the difficulty of coming to a consensus with all different stakeholders. Sometimes when you work with a group of experts in a survey like this, they would like to add more questions because it is interesting from a research perspective, whereas for patients it might be a burden to answer all those questions. You need to find a common ground to bring all these people together and even if we cannot make everyone happy, we need to make sure that they all understand the reasoning behind the final choice that we were making   

Caroline Berchet: An important stake from including the patients voice in the policy making is to make sure the care provides value to patients. From an economic perspective, this allows to reduce wasting in health care expenditure which is critical today given the limited resources that we face. Still today, care fragmentation for people having chronic conditions is too high, having implication on efficiency and health outcomes. 

How is it possible to achieve a representative “patient’s voice” that does not leave anyone behind? And how can this measure help to tackle inequalities seen across the European Union?    

Caroline Brechet: From a methodological point of view, it is important to make sure that you have representatives from all population groups, so for example by educational level, income level, migration status as well those living in rural or other under-served areas. 

Candan Kendir: Yes, it should be upon to all, and it should be also transparent, so no one could think that they did not have the opportunity to contribute. These are two key elements, but on top of that there are hard-to-reach populations that require extra measures. Wales, for example, wanted to ensure that the voices of people from deprived and vulnerable population groups were included in the PaRIS survey, so they decided to go there and talk to people and primary care providers in the region. Being inclusive and transparent are the key things, but sometimes it is necessary to take an extra step. Same thing for people with low health literacy level, for instance. 

And outside the PaRIS initiative, which measures does the OECD take to be inclusive and transparent to avoid inequalities when improving the quality of the healthcare systems? 

Candan Kendir: When we were preparing the EU Cancer Country Profiles, we had consultations with stakeholders, expert groups and patient organisations. We did not have a formal body of patients that we included in the initiative itself, but we asked European Member States whether they communicate with national patient organisations for cancer prevention and care. Of course, today there are many European projects with Work Packages led by patient organisations themselves. I think this is also another good example, not only involving patients in the projects that we are doing but also partnering with patients’ organisations who can advise us in certain aspects.   

Caroline Berchet: At the OECD the question of inequalities is actively addressed. For example, several recent flagship reports present socio-economic inequalities in health status, in access to care or in risks factors to health. Monitoring inequalities is the starting point to shed light on how different population groups are doing, to monitor trends in health inequalities and deploy targeted responses. 

One of the documents that shows inequalities across countries are the EU Cancer Country Profiles. What are the report’s highlights on this regard?  

Caroline Berchet: In terms of key findings, I would say that cancer inequalities are large across Europe, but also within countries. Policy actions should target groups on lower socio-economic groups, and among men population. We saw for example that the cancer mortality rates are on average 75% higher among men than women across the EU, that is a large disparity.    

The second type of inequality within countries that we can observe is related to educational level. In almost all EU countries, cancer mortality rates among low education groups are higher than those in higher education groups. At the same time, cancer mortality rates among higher education groups are rather similar across countries, but there is a lot of heterogeneity in cancer mortality among the lowest education groups. Focusing on low socio-economic groups will help to reduce overall inequalities in cancer mortality across countries.   

What would you say that are the main inequalities across the EU in terms of digital health?  

Caroline Berchet: There are large inequalities in access to technologies, although technologies are key to provide access to care and reduce disparities. One important thing to mention here is that policymakers should ensure that all people can use and access to health technology. Digital health literacy is key.

“The eCAN project will provide some good information on EU practice and evaluate some pilot project’s outcomes that will be useful for sharing experiences across countries”.

The OECD got the status of observer at the eCAN project. How can eCAN and the OECD collaborate in the short and long term?   

Caroline Berchet: In the short term, the collaboration with eCAN is a great opportunity for nurturing the work the OECD and the European Commission are doing. The eCAN project will provide some good information on EU practice and evaluate some pilot project’s outcomes that will be useful for sharing experiences across countries. In the longer term, one way of collaborating is to work on the series of Country Cancer Profiles that are produced for each EU member States, plus Norway and Iceland.   

Candan Kendir: We know that you’ll implement pilot projects regarding cancer care in telemedicine and you will do an evaluation of it. Patient-Reported Outcomes and Experiences are one of the most important aspects to consider in this evaluation. The experience that we have developed at the OECD over the past years on measurement and reporting analysis will be also valuable for eCAN. On the other side, it is interesting to get the results of this evaluation and see the differences and interpretations that we can make when looking at different works. 

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