Do you know how head and neck cancer ribbon looks like? It is likely that most people do not, and it does not matter. However, patients behind it do it. Dale Bates is one of the patients affected by this type of cancer. He lives in Seville (Spain) and today we bring you his testimony dealing with head and neck cancer.  

Dale’s case is special because he invited us to get to know a part of his life by participating in one of eCAN pilot projects. He was treated at Hospital Virgen Macarena (Seville, Spain) and he took part in the intervention group of our pilot 1b (which dealt with head and neck cancer patients). Coinciding with World Head and Neck Cancer Day, we wanted to bring his testimony and offer a few glimpses of this type of cancer, that is not as known as other malignant tumours, but it affected over 100.000 people in the EU in 2022.    

Head and neck cancer mainly comprehends those inside the mouth, throat and voice box. Although less common, those in the salivary glands, sinuses or muscles and nerves in the head and neck are also included in this category.  

Head & Neck cancer: an overview 

There are risk factors that increase the chances of suffering from this illness, such as tobacco use and exposure to tobacco smoke; drinking alcohol or the Human Papilloma Virus (HPV). According to the Mouth Cancer Foundation, this last one could overtake tobacco and alcohol as the main risk factor within the next decade due to high-risk sexual behaviour. 

Depending on where in the head and neck the cancer started the symptoms vary. However, among the most common there are: ulcers or white or red patches anywhere in the mouth that do not heal within 3 weeks; a lump or swelling anywhere in the mouth, jaw or neck that persists for more than 3 weeks; difficulty in swallowing, chewing or moving the jaw or tongue; numbness of tongue or other area of the mouth; a feeling that something is caught in the throat; a chronic sore throat or hoarseness that persists more than 6 weeks or unexplained loosening of teeth.  

The European Cancer Information System (ECIS) estimates 106.511 new head and neck cancer cases were diagnosed in 2022 within the EU member states, Iceland, Liechtenstein, Norway and Switzerland. Compared to other cancers, this number does not rank among the most frequently diagnosed cancers in the continent. In this sense, ECIS estimates that breast (390.675), colorectum (367.409) and prostate (343.860) cancers had the highest incidence in this part of the world the same year. 

Why is it suitable for the eCAN pilot projects?  

Despite showing lower incidence than other types of cancer, head and neck malignant tumours feature specific qualities that make this cancer suitable for taking part in the eCAN pilot projects. Head and neck cancer patients often experience functional impairment due to the tumour and its treatments, including difficulty swallowing, speaking, breathing, pain and cancer-related fatigue. To tackle side effects, rehabilitation is recognised as an important aspect of care for patients suffering from this type of cancer. At the same time, several clinical trials have shown the beneficial effects of physical exercise during and/or after cancer treatment. 

For all these reasons, eCAN chose head and neck cancer patients to take part in the pilot projects conducted during the last months. The aim of this study was to explore how telemonitoring and teleconsultation could improve physical rehabilitation processes of cancer patients.  

References:

European Cancer Information System

MacMillan Cancer Support. Signs and Symptoms of head and neck cancers. URL: https://www.macmillan.org.uk/cancer-information-and-support/head-and-neck-cancer/signs-and-symptoms-of-head-and-neck-cancer

Mouth Cancer Foundation. Self Check. URL: https://www.mouthcancerfoundation.org/wp-content/uploads/2020/10/mouth-cancer-self-check-croped.pdf

Focus group with patients, HCPs, and patient assistant agents about telemedicine

As a Joint Action aimed at reducing inequalities in cancer prevention and care, end-user perspectives and reflections are central to eCAN. The INAB|CERTH organisation has undertaken several actions under Work Package 8 to actively involve potential end-users and gain a comprehensive understanding of their perspectives on eHealth services. This involvement has led to the organisation of three focus groups under the task 8.2, Participatory Design, in which members of AUTh and 3rd RHA have also participated.

The first focus group (FG) focused on exploring participants’ perceptions of telemedicine and involved thirteen participants (patients, healthcare professionals and patient support workers). In the second, five patients participated to give their opinion on the eCAN mobile application while in the third healthcare professionals commented on the dashboard platform. Taken together, these discussions have provided important input from the wide range of participants involved.

Key points from the eCAN focus groups

The findings from the telehealth focus group highlight many challenges and needs of patients, HCPs and patient supporters. Effective communication, education and support emerge as critical elements for the smooth adoption of telemedicine.

In terms of the technologies that are being developed, the focus group discussions highlight specific requirements and considerations. For the eCAN app, patients expressed satisfaction and provided valuable suggestions, emphasising the importance of usability, improved data visualisation and additional features such as calendar functionality.

On the other hand, discussions on the eCAN dashboard revealed insights from HCPs, emphasising the need for adaptability, immediate technical support and the potential use of the dashboard as a complementary tool to regular care.

The conclusions from the telehealth focus groups are consistent with the technology-focused discussions developed, highlighting the importance of user-friendly design, immediate support and clear demonstration of benefits to both collectives. Bridging these aspects is crucial for the successful integration of telemedicine technologies into healthcare systems.

End-users’ perspectives on telemedicine

The results of the first focus group, focused on telemedicine, are summarised in ten user goals. These include elements such as non-intrusive communication, which is crucial for the interaction between patients and healthcare professionals, and increased motivation for the clinicians as they set the ‘rules’ for such communication.

Usability has been also identified as a relevant step for all software modules, including personalisation capabilities. At the same time, the need for more digital literacy training for patients and professionals and a commitment to short and concise interactions is also emphasised.

Telemedicine is emerging as an alternative for cancer treatment and monitoring, especially in rural areas where patients have limited access to healthcare providers. However, in addition to the use of mobile applications and instant messaging, it is concluded that more mature and less intrusive means of communication (e.g. email, SMS, phone calls, etc.) should also be actively investigated as part of practical telemedicine guidelines and/or pilot studies.

Of course, as these virtual alternatives are developed, the implementation of strict regulations should not be neglected, including the protection of patient data and legal support for healthcare professionals in the event of an error. To ensure trust, there should be transparency about which software tools are suitable for use in the eHealth context, perhaps through well-known certification schemes.

Finally, focusing on specific population groups (e.g. people with limited mobility, minorities with limited access to health services, or younger people who would be more likely to adopt eHealth tools) is crucial to maximise the impact of telemedicine services, reduce their risk of adoption and improve the risk-benefit ratio.

User Goals about telemedicine

User Goals about telemedicine

Insights about the eCAN mobile application and the dashboard

In the other two focus groups, both patients and healthcare professionals have also provided different insights on the eCAN application and the dashboard platform, respectively.

Participants in the first group stressed the need to involve people with different levels of digital literacy in usability studies and to visualise information or data beyond numbers for better interpretation.

On the other hand, patients’ concerns arise when the use of such applications may lead to a deterioration in their health status and exacerbate the impact on their mental health. They also argue that the benefits of using the app should be clear to both patients and healthcare professionals.

In relation to the dashboard, clinicians comment that the platform used for eCAN needs to be resilient to emerging needs in clinical practice and provide immediate technical support during its operation. “Guidance from people who have used the platform in practice would also be helpful”, they have said.

They also point out that the dashboard could be used as a complementary tool to routine care and should be designed to fit the workflow of each healthcare professional, increasing the usefulness of primary data to improve patient care.

Reference

Active Involvement of Potential End Users in Strengthening eHealth for Cancer Prevention and Care (WP8). 2024.

Equity and digital transformation are not always perceived as two sides of the same coin, and although there is an undeniable change in how we behave and interact in this technologically driven World; it is not less true that digital tools offer an incredible range of innovative solutions that can be helpful to reduce inequalities in different fields. 

The transformation healthcare systems are undergoing is intrinsically linked to the incorporation of digital solutions. But there are still some doubts on how this should be done, and the fact that research shows that telemedicine can close healthcare gaps is not enough to fully embrace digitalisation yet.  

In the specific field of cancer, research efforts are focused on consolidating telemedicine as a common practice across Europe, enabling equal access to care. The current scenario reveals that there are gaps in cancer care depending on where the cancer patient lives, whether urban or rural areas; their socio-economic status; the population group they belong to; and how they identify. These are what we know as social determinants of health. 

Inequalities based on our ZIP code

15500 and 06240 are ZIP codes from Fene (north-west Spain) and Sjøholt (west Norwegian coast). Despite being 2320 km apart, these two villages have something in common: both are rural areas where access to cancer care differs from the one in big cities. Mónica Fernández, from Spain, and Nils Petters Sjøholt, from Norway, as cancer survivors, know that for a fact. They are well aware that when cancer touches someone’s life in these territories, distances become problematic, since patients often need to travel long distances to have access to treatment, psychological support and rehabilitation processes.  According to Mónica, “living in a rural area ensures quality of life, but healthcare services close to my place should be better equipped”. She was diagnosed with breast cancer in 2021 and had to travel 40 km to receive radiotherapy for three months, “although there are people from my region that need to drive up to 100 km to get the same treatment”, she adds.  

Nils Petters’ experience has some resemblances. When he was first diagnosed with prostate cancer in 2003, he had to go to Trondheim to get surgery, 260 km from his hometown. “For three years I went to Trondheim for control visits every three months”, he explains. Later on, when he was diagnosed with appendix and skin cancer, he received his treatments a little bit closer, 40 km from Sjøholt. “People living in an urban area have things easier”, he points out. 

The evidence supports his statement. Several studies on cancer care and inequities reveal that cancer patients living in rural areas experience health care disparities and poorer clinical outcomes than their counterparts in urban areas. One useful fact to understand where these inequalities come from is that the “average road distance to essential services is much shorter in urban areas compared to rural areas”, according to EU data, and that may affect almost 1 out of 3 people who live in the countryside in the European Union. For instance, in remote rural areas, the average road distance to the nearest doctor is almost 21.5 km, compared to 3.5 km for people living in cities.

In this sense, Vittorio Castaldo, project manager of the eCAN pilot projects and researcher at the Regina Elena National Cancer Institute in Rome, states that the greater the distance and the travel time, the higher the chances of neglecting patients’ needs. Offering continuous monitoring and psychological support through digital tools “empowers patients and helps us to ensure that patients who live far from medical centres receive equal care than those who live in urban areas”, Castaldo adds. 

A network of support 

Neither Mónica nor Nils Petters received psychological support. In her case, Mónica did not apply for it, although she thought about it. “When I got my diagnosis, I did not react well. I knew I had a lump, because I could touch it, but after tests, they found five lumps. Doctors finally decided that surgery was the best way to tackle it, which was not my preferred option. That was when I felt the World was falling apart”, she explains.  

Thanks to her family and friends’ support, and also because “cancer was never a taboo” for her, she could mentally deal with it. However, she stands for “providing psychological support to everyone who needs it. Cancer processes are not the same for everybody and depending on the sequelae, patients may or may not require it. In my case, I was a young woman who also did not suffer so many corporal changes. When your physical appearance changes a lot, I think it is harder”.  

When Nils Petters recounts this period of his life, he relies on humour. “They [doctors] used to remove small pieces of my body from time to time”, he explains while laughing. For him there is a paradoxical truth: “the key to fully recovery from cancer lies in early detection”. In the case of prostate cancer, active surveillance and the use of the appropriate early detection tools can make a big difference in the possible outcomes of a patient. 

In this case, Nils’ wife was his psychological support, because by that time it was overwhelming to find this kind of help and reliable information in public services. He acknowledges the importance of providing psychological support “to anybody with a cancer diagnosis, especially after treatment”. However, accessing these services is not always easy. “If you need a therapist, you have to go to your regular doctor, and s/he needs to apply for it. When I was a patient, it was not certain that you’d get it, and there was a long waiting list because there was and still is a workforce shortage”, he points out.  

Neither of them has used telemedicine services, but both agree that if they had had the chance to use digital tools, they would have tried them. Mónica notes that “digital tools and communication are paramount, but you also need patients to have some digital literacy”. Nils Petters believes that it would have been much easier for him to have had these tools at that time. 

The role of telemedicine 

In fact, technology transforms the way patients face cancer. “Distances become shorter”, says Efthyvoulos Kyriacou, the head of the Telemonitoring team at eCAN that works at the Cyprus University of Technology (CUT). “A patient might need to talk to his or her physician or psychologist and thanks to telemedicine they do not need to wait three weeks for an appointment. You can have that on a more regular basis through telemedicine services”. Digital tools enable communication, and the opportunity to connect the right clinician to a patient, instead of moving the patient around. “This is especially relevant for countries that have dispersed population in large rural areas”, argues the CUT’s professor. 

At eCAN, research efforts are dedicated to developing mobile apps, web-based interventions or the use of wearables for remote monitoring of pain, anxiety or quality of life. According to Kyriacou, it was after COVID pandemic when “the healthcare community started appreciating the opportunities and usefulness of tele-support and telemonitoring, perhaps also because new generations are digital natives”. 

His perspective coincides with Castaldo’s view. The Italian expert believes that “opening up this new scenario for telemedicine is useful to create a more sustainable and effective healthcare era”. However, “it is relevant to keep in mind that telemedicine is not replacing in-person visits, rather it is a parallel tool useful to overcome some issues related to cost-effectiveness and remote access to care”, he concludes.    

Navigating paths towards equality: where to focus? 

As is often the case, innovation outpaces legislation. Digital tools are available, but the legislation enabling their operation is yet to catch up. However, it appears to be closer than ever. After years of documents bouncing from one institutional desk to another, the prospects of finally reaching an agreement on a European Health Data Space (EHDS) are promising. 

The EHDS will be the pillar that sustain health data management, and the guide that defines how the General Data Protection Regulation (GDPR) should be handled across the European Union”, Kyriacou explains. The document is grounded in the 2022 proposals of the European Commission, and both the Parliament and the Council have reached their own views on what the final text should contain. The two are now entering negotiations with each other, involving the Commission as well, with the aim of reaching a final agreement that can be enacted into law. 

Integrating digital tools into clinicians and patients’ daily routine is also a matter of persuasion and trust-building process. During the recruitment phase for the eCAN pilot projects, Vittorio Castaldo has seen both negative and positive reactions. Whereas some patients feel reluctant to use it because they “want to have this eye-to-eye conversation with the clinicians, to catch their gestures, etc.”; there are others that “are happy to receive tele-rehabilitation care for breast, and head and neck cancer, and mainly tele-psychological support”. In the trust-building process, Mónica Fernández also highlights the importance of “mastering the art of communication”. “Healthcare professionals need to learn how to better explain what is happening to us and encourage us to get psychological support. They cannot force us, but they can stimulate us”, she points out.  

Digital tools are available, EU regulations are on their way and the ability to convey the right message to the proper actors is a never-ending task. Navigating the journey towards equitable access to healthcare presents ongoing challenges, not only in the realm of cancer care but also in its prevention. What seems to be unmistakably evident in this intricate process is the growing influence of telemedicine, now asserting its position in the core of European healthcare systems, akin to a respected member at the family dining table. 

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. 

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.

The European Public Health Conference (EPH) 2023 has provided an opportunity to bring together some of the eCAN Work Package (WP) leaders. In particular, WP2 (Communication) and WP4 (Sustainability) have presented posters reflecting on the progress of the Joint Action, each focusing on their respective areas. 

On the one hand, Elisa Piñón and Edgar Hans from WP2, led by the Institut Català d’Oncologia (ICO), have displayed their poster entitled “Bringing an EU Joint Action to TikTok: the case of eCAN“. The banner explains the communication team’s decision to use this social network, among others, to communicate the progress and outcomes of the European project. It also provides some preliminary results on the performance of TikTok in terms of followers, posts and engagement. 

On the other hand, Claudia Habl, a member of WP4 led by Gesundheit Österreich GmbH (GÖG), also presented her team’s poster entitled “JA eCAN roadmap towards a sustainable implementation of eHealth initiatives in cancer care. It describes the process of collecting information on EU Member States through expert-validated national factsheets, which will lead to map eHealth and cancer care policies across Europe. 

TikTok as a tool for science communication 

Elisa Piñón, lead author of the WP2 poster, argues that “so far, TikTok has shown higher engagement rates than other audio-visual social media, such as Instagram and YouTube, despite having lower number of posts and followers”. 

European Public Health Conference poster of Work Package 2

European Public Health Conference poster of Work Package 2

“It is not common for European projects to choose TikTok as one of their outreach tools”, says Edgar Hans, also author of the WP2 poster. “However, there are good examples of science communication on this platform, it allows us to reach different audiences and promote our creativity when talking about eCAN. We believe it is worth a try”, he concludes. 

According to the authors of the poster, the Chinese social network has several strengths. These include the opportunity to innovate in the communication of European health projects, with unexplored and attractive formats, or a greater likelihood of achieving a large reach and impact in a short time. 

Showcasing eHealth policies and initiatives across Europe 

The WP4 poster also includes contributions from members of WP1 (Coordination) and WP2. By collecting data from EU/EEA Member States, the Sustainability WP aims to provide an overview of European eHealth policies and initiatives with a focus on cancer. The project website will display the validated information in a dashboard with maps and indicators during next year. 

European Public Health Conference poster of Work Package 4

European Public Health Conference poster of Work Package 4

Looking in detail at the data collected so far, preliminary results show a wide variation in the use of telemedicine in cancer care, despite the fact that most EU countries have a national eHealth strategy in place. The results will be further analysed in practical cases and situations, including telerehabilitation and psychosocial support in breast and head & neck cancer treatment. 

EPH’s flagship theme, One Health 

Since 1992, the European Public Health Association (EUPHA) has organised the EPH Conference, the biggest annual public health event in Europe bringing together research, practice, policy and education. The 16th edition, that has been held in Dublin between the 8th and the 11th of November with more than 2,450 delegates worldwide, has addressed diverse topics related to the concept One Health.

This term, according to the World Health Organization (WHO), refers to an integrated, unifying approach that aims to sustainably balance and optimise the health of people, animals and ecosystems. It recognises that the health of humans, domestic and wild animals, plants, and the wider environment (including ecosystems) are closely linked and interdependent.  

The theme of the forthcoming 17th European Public Health Conference 2024, to be held in Lisbon, Portugal, will be “Sailing the Waves of European Public Health: Exploring a Sea of Innovation”. 

References:

E P Hermida, E Hans Cano, S Ela Aguilar, T Ferro, Bringing an EU Joint Action to TikTok: the case of eCANEuropean Journal of Public Health, Volume 33, Issue Supplement_2, October 2023, ckad160.1205 

C Habl, K Habimana, J Weiss, T Schmitt, E Hans Cano, E P Hermida, JA eCAN roadmap towards a sustainable implementation of eHealth initiatives in cancer careEuropean Journal of Public Health, Volume 33, Issue Supplement_2, October 2023, ckad160.1205 

It is estimated that 1 in 8 women will be diagnosed with breast cancer in their lifetime. Not so long ago, this diagnosis was often associated with death. But the tide has turned in the Global North, and innovations in healthcare and early detection are expected to continue to reduce mortality rates. The earlier cancer is diagnosed, the better the chances of survival.   

But surviving is not the same as actually living. Several studies have shown that surgical morbidity is a common complication of breast cancer treatment. In fact, up to 70% of patients have been reported to have postoperative breast cancer sequelae, including axillary girdle syndrome, pain, lymphangitis, fatigue, cognitive, physical, social and emotional impairment.

During Breast Cancer Awareness Month, eCAN’s partners and collaborators would like to highlight the need to improve the quality of life of breast cancer patients. Indeed, eCAN is committed to improving their lives by highlighting the vital role of rehabilitation in their recovery process.

 Cancer research has shown that physical activity helps patients regain strength and mobility. According to recent publications, exercise is an effective strategy that positively affects breast cancer survivors’ quality of life, cardiorespiratory fitness, and body composition. Healthcare professionals are encouraged to promote the uptake of exercise.   

Survivors may also experience social and emotional sequelae. In this sense, physical rehabilitation also boosts their confidence and mental well-being. Healthcare professionals and researchers agree that emotional support and counselling are equally important on the journey to recovery. 

The vital role of rehabilitation

The World Health Organisation (WHO) also recognises the impact of rehabilitation and defines it as “the use of all means to reduce the effects of disabling and handicapping conditions and to enable people with disabilities to achieve optimal social integration”.

Despite the recognition of the role of rehabilitation for patients, “the needs of this population of cancer patients are still underestimated and undertreated,” says Vittorio Castaldo, one of the researchers involved in the eCAN pilots. For this reason, this project aims to highlight and incorporate telemedicine tools that can facilitate the assessment of motor and sensory deficits and enable remote training and education of patients.  

The study will use patient-reported outcome measures (PROMs) and experiences (PREMs) to explore how telemonitoring and teleconsultation can improve the physical and psychological rehabilitation processes of these cancer patients. It is expected to enrol 354 patients with breast, head and neck and advanced cancers from 18 cancer centres and ten different EU countries.

References:

Joaquim A, Leão I, Antunes P, Capela A, Viamonte S, Alves AJ, Helguero LA and Macedo A (2022) Impact of physical exercise programs in breast cancer survivors on healthrelated quality of life, physical fitness, and body composition: Evidence from systematic reviews and meta-analyses. Front. Oncol. 12:955505. doi: 10.3389/fonc.2022.955505

The Joint Action has launched two pilot projects using patient-reported outcome measures (PROMs) and experiences (PREMs) to explore how telemonitoring and teleconsultation can improve the physical and physchological rehabilitation processes of cancer patients. It is expected that 354 patients and 18 cancer centres from ten different EU countries participate in the study. 

Patients involved in the clinal trials suffer from breast, head & neck, and advanced cancer. The study lasts for eight weeks, in which the participant patients will be asked to attend sessions with a physiotherapist or a psychologist, and complete some questionnaires to assess their health outcomes and experiences.

The results of these pilots will provide a framework of recommendations and guidelines for the integration of telemedicine and remote monitoring into European healthcare systems.

Smartwatches and the eCAN app to collect data 

WP7, responsible for telemonitoring, has developed a mobile APP to track patients’ outcomes, experiences, activity and lifestyle. Other indicators, such as quality of life, pain or distress, will be reported by patients via the eCAN app.

At the same time, smartwatches will be used to automatically collect data on patients’ daily activity, sleep quality, heart rate, etc. Clinicians will collect all this data in a secure web platform that will help them make decisions about patient treatment and care, while also enabling future artificial intelligence (AI) applications.

Data security and privacy protection 

Data security and privacy, together with their challenges and risks, will also be addressed in parallel with the conduct of the study. The digital tools used have security and privacy systems that guarantee patients’ rights and meet the General Data Protection Regulation (GDPR) requirements for teleconsultation.  

The main purpose of this platform is to provide a versatile and privacy-oriented solution for the management of telemonitoring and remote medical services. In doing so, it aims to increase the efficiency and accessibility of medical support for all patients, while minimising inconvenience and accommodating different needs.

Why these types of cancer? 

Surgical morbidity is a common complication of breast and head and neck cancer treatment. In fact, postoperative sequelae of breast cancer have been described in up to 70% of patients, including axillary girdle syndrome, pain, lymphangitis, fatigue, cognitive, physical, social and emotional impairment.

On the other hand, head & neck cancer patients often experience functional impairment due to the tumour and its treatments, including difficulty swallowing, speaking, breathing, pain and cancer-related fatigue. To tackle secondary effects, rehabilitation is recognised as an important aspect of care for patients suffering from breast and head & neck cancer.

Several clinical trials have shown the beneficial effects of physical exercise during and/or after cancer treatment. In addition, psychological support is essential for patients with advanced cancer to improve their quality of life and level of distress.

The World Health Organisation (WHO) also recognises the impact of rehabilitation and defines it as “the use of all means to reduce the effects of disabling and handicapping conditions and to enable people with disabilities to achieve optimal social integration”.

“However, the rehabilitation needs of this cancer patient population remain underestimated and undertreated”, states Vittorio Castaldo, one of the researchers involved in the eCAN pilots. For this reason, this project seeks to highlight and include telemedicine tools among the means that can facilitate the assessment of motor and sensory deficits and enable remote training and education of patients.

Experts and policymakers discuss cancer care challenges in a high-level meeting in Barcelona

Experts, policymakers, healthcare professionals and eCAN representatives, along with representatives from other Joint Actions, have attended to the High-Level Meeting Challenges in Cancer Care. The Palacio Real de Pedralbes, in Barcelona, has hosted this event organised by the Spanish Presidency of the Council of the European Commision. 

The whole meeting has revolved around the importance of providing a comprehensive response to current challenges and opportunities in cancer care at the European Level. According to Silvia Calzón, Secretary of State for Health and in charge of opening the event, this meeting is “one of the most important events under the Spanish presidency of the Council of the European Commision”. 

Throughout the conference, relevant personalities such as Matthias Schuppe, leader of the European Beating Cancer Plan (EBCP) or Pilar Aparicio, Spanish general director of Public Health, have presented the last health policy innovations that have been implemented for cancer control at the European and Spanish level. 

On her side, Aparicio has also highlighted the EU initiatives Spain is participating into. Among them, she mentioned the eCAN JA, as well as CraNE, JANE, PERCH, ORION, JA PreventNCD, etc. All of them align with the three pillars of the Spanish cancer strategy: Innovation, Research and Information. In fact, one of the most important points of this strategy focuses on improving quality of life, which relates to one of the eCAN objectives: the improvement of phycological care for cancer patients. 

Multidisciplinary and quality approach 

The need to understand how to better organise the delivery of cancer care has been another central topic in this meeting. Andreas Charalambous, the president of the European Cancer Organisation, has stated that “to fully optimise cancer care, through the EU network of Comprehensive Cancer Cantres, bringing forward the full contributions of the cancer care team through multi-disciplinarity and multi-professionalism is a must across the disease continuum”.  

Caroline Berchet, from the Organisation for Economic Co-Operation and Development (OECD), has also intervened and presented the Country Cancer Profiles that prove that the burden of cancer in Europe is devastating and marked by strong inequalities. 

The OECD representative has remarked how national governments can tackle these inequalities by following four main steps: Improving prevention to encourage healthier lifestyle; improving accessibility to early diagnoses and to cancer care; improving quality of cancer care; and increasing measurement to inform policy & practice. 

Working together 

At the end of the conference, other political personalities have talked about the importance of creating synergies and joining efforts. Stella Kyriakides, European Commissioner for Health and Food Safety, has sent her remarks on this session and pointed out that tackling cancer is based on the “simple but powerful idea that we are stronger and more effective when we work together – when we share expertise and collaborate at all levels of society”.  

Right after, José Manuel Miñones, Minister of Health of Spain, has expressed similar thoughts in his final intervention: “we need that Europe prioritise healthcare and guarantee a coordinated and fair response” to address the needs of the European citizens.  

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.