Breast Cancer: a lifelong journey

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

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

eCAN pilots to assess benefits of telemedicine in cancer care get green light for patient enrolment

A cancer patient looking at their phonePexels (Thirdman)

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.

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

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

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.  

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

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. 

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

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. 

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

Join our European Week Against Cancer campaign with the hashtag #eCANtribution

eCAN EWAC campaign

The European Week Against Cancer (EWAC) is an annual campaign that runs from 25th to 31st of May under the leadership of the Association of European Cancer Leagues (ECL). During the event, all individuals, and cancer and health-focused organisations are invited to join the campaign and let their voices be heard in the fight against cancer in Europe.

In this context, eCAN has created its own campaign for the occasion under the title #eCANtribution. The aim is to spread the word about how the local/regional institutions that take part in the Joint Action work to improve the integration of telemedicine and remote monitoring in health care systems for cancer prevention and care.

The European project will present, through short videos, some of its partners and the actions they make to contribute to the main objectives of eCAN: reduce cancer care inequalities across the European Union and improve effectiveness, efficiency and quality in cancer prevention and care, particularly for cross-border emergencies and health crises, such as COVID-19.

As the week progresses, the various statements made by eCAN participants in the framework of the European Week Against Cancer will be published below.

And you, how do you contribute to tackle cancer in Europe?

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

eCAN’s Steering Committee unveils the first achievements of the Joint Action

Some participants of the second eCAN Steering Committee Meeting

The Steering Committee meeting of eCAN has been held today, May 11th, in a virtual format and with more than forty participants from beneficiary and affiliated entities. The meeting has served for the different Work Packages to present the progress achieved on the first quarter of 2023 and share their upcoming assignments. 

The reunion has been welcomed by Matthias Schuppe, responsible for preparing DG SANTE’s work on the ‘Europe’s Beating Cancer Plan’, Maren Hunds, member from the European Health and Digital Executive Agency (HaDEA), Dheepa Rajan from the European Observatory on Health Systems and Policies and Caroline Berchet, health economist at the OECD Health Division. The four professionals have spoken at the beginning of the meeting, stressing the importance of the JA and the possibility of establishing synergies in the near future with other entities and European initiatives. 

While all the Work Packages were able to share their progress, the bulk of this Steering Committee focused on the two pilots that eCAN is developing in teleconsultation and telemonitoring, which should be launched on June. 

eCAN’s first achievements 

Following the agenda, OECD and WHO/OBS, as eCAN observers, highlighted their supporting role to the overall project’s progress. The JA has been selected as example of project linked to quality of life in an exhibition of European projects organised by DG SANTE within the framework of the European Week Against Cancer (EWAC). 

WP8’s presentation has been focused on stakeholders’ identification and engagement. The colleagues from Greece have organised and taught four workshops for eCAN participants between April and May. As for the upcoming tasks, WP8 will soon conduct a gap analysis and assess the training needs of patients, caregivers, and clinical experts. They will also develop an educational framework and training materials. 

Andrea Pace, from the IRCCS Regina Elena Cancer Institute (IFO-IRE) has conducted both presentations of Teleconsultation (WP5) and Legal, ethical framework and cybersecurity (WP6), focused on the initial development of the JA’s pilots. 

Halfway through the Steering Committee, the Telemonitoring team (WP7) has also given some insight into its work until now. This includes partially completing the landscape of remote surveillance of patients and the ongoing development of the telemonitoring system to start pilots testing. In fact, they show several mock-ups of the application that will be used to monitor patients participating in the study. 

Progress on sustainability, evaluation and communication 

The past and following months have also been addressed by the entities belonging to Austria, Poland and Spain, and they have discussed the risks, gaps and opportunities that they expect to experience in the upcoming weeks.  

The Sustainability Work Package (WP4) has finalised all preparations on the Country Factsheets, documents that compile information on different territories’ preparedness, legislation and initiatives on cancer and digital health. They have been verifying the available data over the past months and country factsheets will soon be sent for external validation. 

The team responsible for the Evaluation (WP3) is about to finalize the second progress report and is preparing the cost and consequence analysis framework together with the protocol for the SWOT analysis. Both milestones are scheduled for July 2023. 

Finally, the Communication team (WP2) has presented their campaign for the European Week Against Cancer (EWAC) and showed the recent content published on the website (interviews, news, newsletters…) and social media, with TikTok emerging as one of the most prominent social networks for eCAN. The Spanish team has already submitted two deliverables, the most recent one being the updated version of the Communication and Dissemination Plan. The main ahead tasks for the communication team include preparing the first Annual Report and start organising the project’s final conference. 

Towards the first half of the Joint Action

The Joint Action “Strengthening eHealth including telemedicine and remote monitoring for health care systems for cancer prevention and care”, launched in September 2022, is approaching its first year. 

The summer months will be crucial for its progress and evolution, as many important milestones will be reached, with the start of the pilots being the most important one. At the same time, the first anniversary of eCAN will also serve to take stock of what has been achieved so far and to preview the outcomes that this European initiative could provide. Such progress will be monitored and explained in more detail at the next Steering Committees. 

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

eCAN workshop series concludes with meetings on empowerment and EU networking

Wordcloud of the main topics discussed during the last eCAN workshops by AUTH

The third and fourth workshops of eCAN Work Package 8 have brought together 14 and 23 participants, respectively. On the one hand, participants have been asked to broaden the eCAN ecosystem beyond the European scale and to consider local, regional or national approaches when spreading the word about the Joint Action.  

On the other hand, eCAN partners have engaged in an open dialogue to understand the needs of stakeholders (patients, carers, clinicians) for the forthcoming piloting phase, identifying the needs across various Work Packages, and devising effective strategies for implementing educational materials. The ultimate objective was to equip participants with the necessary tools to effectively address these needs. 

Beyond and within the EU  

“We need to expand our work, not only for dissemination purposes, but also to extend our network with partners and countries that are not part of eCAN, such as Germany. We are trying to improve telemonitoring and teleconsultation across Europe, so we need them to collaborate and listen to us to engage at another level” said Despoina Mantziari, from the Laboratory of Medical Physics and Digital Innovation at the Aristotle University of Thessaloniki (AUTH), organiser of the meetings.   

This outreach would introduce eCAN to communities outside its ecosystem and, through synergies and collaborations, could capitalise on the knowledge produced by the Joint Action Work Packages and foster interactions with others for future collaborations (experience sharing, policy development opportunities…).  

Empowerment for a better eHealth 

A central theme that resonated throughout the last workshop has been the concept of patient empowerment. The World Health Organization (WHO) defines it as a process that grants individuals greater control over decisions and actions affecting their health. This principle is a cornerstone of global health and social care strategies. 

Mantziari further elucidated the essential components encompassed within this concept. These components include respecting the unique needs, preferences, and autonomy of patients, ensuring access to appropriate and personalized treatments, and actively involving patients in decisions related to their health. Patient empowerment also entails facilitating access to safe, high-quality services and support, as well as providing reliable, relevant, and comprehensible health information. Involving patients in health policy development is also essential to ensure that services are designed with patient-centricity at the core. 

Roadmap for Stakeholder Engagement 

With the conclusion of the workshops, the members of Work Package 8 now face several important tasks. Their immediate focus is to conduct a preliminary gap analysis. This will be followed by a thorough assessment of the training needs of patients, caregivers, and clinical experts. Additionally, a comprehensive framework of educational activities and training materials will be developed for both patients and caregivers/clinical experts.  

The completion of these assignments will pave the way for a more robust stakeholder engagement strategy, fostering collaboration, and enabling eCAN to advance its mission of improving eHealth practices.  

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

Policymakers’ involvement stars the second eCAN workshop led by 3rd RHA of Greece

The second workshop from eCAN’s Work Package 8 has brought together a total of 26 participants interested in how to involve policymakers in a research project like this Joint Action. In particular, the aim of this second online gathering was to share practical strategies for coordinating and implementing effective recruitment and engagement of policymakers. 

As in the previous workshop, Despoina Mantziari, from the Laboratory of Medical Physics and Digital Innovation at the Aristotle University of Thessaloniki (AUTH), organised and led the meeting. During her intervention, Mantziari stated that, when approaching this type of actors who belong to different entities and work at various scales, “an interdisciplinary strategy is necessary”. 

“It is important to remember that in projects such as eCAN we do not only work to achieve the objectives of the consortium, but we aim to expand our work and propose real solutions to be implemented in society”, said the WP8 member. 

Barriers to engage with policymakers 

Securing the commitment of policymakers is no easy task and there are certainly significant obstacles to overcome. These barriers relate to the policy-making process (lack of a culture of dialogue, primacy of political priorities, poor long-term policy planning, inflexible and non-transparent policy processes, etc.) and to the institutional set up (limited resources, weak incentives and limited capacity to engage in evidence-based policymaking). 

In the face of these some of these barriers, what project members can do is to draw up a skills map, identifying the context and scope of each policymaker, so that the approach to these actors is transparent and as clear as possible. The clearer the roadmap and the role they should play, the more willing policymakers will be to help, according to Mantziari. 

Two workshops ahead 

There are still two workshops scheduled in the calendar for eCAN participants. The first one is titled ‘Liaison with EU-wide networks: Spread the message across the EU’ and the last one ‘Empowerment Tips&Tricks: Rights and coping frames’. Both will offer a broader view on how to understand and approach stakeholders’ engagement. 

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.

eCAN participants meet to learn how to engage patients and professionals in research projects

A total of 29 participants have joined the first eCAN’s internal workshop on improving stakeholders’ engagement in research projects. This event had the aim of sharing practical strategies for coordinating and performing effective patient and healthcare professionals’ recruitment and engagement, based on Patient and Public Involvement (PPI) principles and previous experience in working in Research and Innovation initiatives with cancer patients and healthcare workforce. 

The Lab of Medical Physics and Digital Innovation at Aristotle University of Thessaloniki (AUTH), one of the work package 8 members, organised and led the online workshop. The Lab’s research associate and eCAN member Despoina Mantziari has started presenting the preliminary results from the Stakeholders Mapping survey that WP8 developed in order to identify relevant stakeholders for this Joint Action. 

Preliminary survey’s results show different levels and types of involvement among stakeholders. WP8 has identified some strengths and barriers related to the formation of a sustainable and inclusive community of multiple stakeholders for the eCAN project. While policymakers and the scientific community are usually engaged in most parts of the process, citizens and healthcare professionals’ collaboration is not as frequent and active as it should be. 

In this regard, Mantziari has highlighted how important is to recruit citizens for testing and validating research activities. She has explained some of the key elements that professionals should keep in mind when it comes to engage patients. Open communication, transparency and being specific about the research needs and the patient’ role is essential to cultivate trust.  

Since sixteen different countries participate in this Joint Action, participants need to consider the cultural and socio-economic situation of each territory. Diverse realities may affect the engagement level in different ways, therefore all tips and strategies for involving stakeholders should be adapted to the context in which they are developed. 

Next workshops 

Apart from patients’ involvement, Mantiziari remarked how important is to keep professionals motivated and engaged. Their background and expertise are crucial to build trust with patients and for the success of the project.  This workshop will be followed by three more sessions. Next 28th of April, the Lab will hold a workshop on ‘Collaboration with policymaking actors: How to maximise the impact of your work’. In that session, WP8 will explain the importance of getting policymakers involved in a research project such as eCAN.

Later on, the team will organise two more events: ‘Liaison with EU-wide networks: Spread the message across the EU’ and ‘Empowerment Tips&Tricks: Rights and coping frames’. Both will offer a broader view on how to understand and approach stakeholders’ engagement.

Logo EUCo-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA.                                                                       Neither  the European Union nor the granting authority can be held responsible for them.