I discussed the vision behind ECHoS Project with Hugo Soares, Agency for Clinical Research and Biomedical Innovation AICIB – National Cancer HUB, Portugal, during an event organized in Bucharest by the Executive Agency for Higher Education, Research, Development and Innovation funding (UEFISCDI), ”Working together for a quick and diagnosis and better treatments for cancer EEA & Norway Grants contributions to the EU Mission Cancer”.

• How does the ECHoS project align with the objectives of the Cancer Mission and how will it contribute to reducing inequalities in access to cancer care?

ECHoS is not a research project, it is a project aiming to put together groups of stakeholders, who are not considered conventional when you think about cancer care. This will enable interactions beyond those involving researchers, medical doctors, and the health system, who are traditionally our main players. But when you think about citizens and patients, their needs go beyond what healthcare providers and researchers can do. Employees, municipalities, and regional administration members are also stakeholders. If you think about prevention, in a city there is a lot of space for intervention by local authorities or by the educational sector. Such stakeholders can raise awareness of risk factors such as smoking and promote healthy habits. There is also an opportunity to involve the sports community (e.g., ministry of sports, professional regional teams) who can work with citizens, as well as the spiritual leaders who also can have an influence on how people react and adhere to the national campaigns towards less smoking habits and healthier diets.

When you think about cancer there is much more than just health and research. ECHoS aims to get close to communities, involve them in cancer research and then go to researchers, health professionals, and the EU Commission and share the real needs, involve them, and reach back to the community. By creating this positive feedback loop we will be able to identify needs beyond classical ones. The authorities will create the conditions to answer these needs and implement them. Then again, patients and citizens should be involved in assessing how these solutions and technologies work, revise them, and reconnect again with the initiative, reaching to the European authorities to the local organizations.

• How will the project ensure the sustainability of such multi-stakeholder collaboration?

In Portugal, the sustainability goals might differ from Romania’s or Germany’s. In the EChoS, we will work on developing a set of criteria and guidelines on how to make these sustainable. It is important that structures created in different countries maintain contact and interaction between national goals, otherwise it will evolve differently and create silos that we want to avoid.

What is important is that we have this common framework. (…) You can’t go in all directions at full speed. You have to prioritize according to the needs of citizens, have the right frameworks for implementation with awareness related to what is happening, and evaluate the positives and negatives of the implementation. The good thing about ECHoS is the opportunity to put all the learnings together.

• How do we engage citizens to become actively involved in prevention and ensure they do not become patients?

It doesn’t work just to provide information and expect people to follow and voluntarily adhere to what they are told to do. We need the population to understand, not just to provide directions, but to educate on the benefits of these directions and the risks. It is important that we are open to listening to what the community is saying.

In Portugal, we have very different rates of people adhering to screening programs in the north versus the south. It is important to highlight that we have national education and health care systems thus, virtually, equal access to both education and care. It might be because of public transportation, costs of commuting, it might be related to local beliefs, local groups influencing them, or maybe traditions. And all this should be addressed.

When you think about patient engagement, it is not about more campaigns on television, it’s about asking why people don’t go to screening programs. And you don’t just ask this in expert groups. You also ask people about this.

It is all about enabling people to participate in the process of developing solutions. Imagine the low adherence is related to public transportation. We might think that a solution could be, for example, cheaper bus tickets – or related. But the actual problem might be there is no actual transport at the right time because people work 9h-to-17h with just 1h for lunch, and they need to spend 1h or 2h just on public transportation to get to the doctor and return. It is really important that we involve them in co-designing and assessing the solutions that are put forward.

• How do we ensure citizens’ trust in disruptive technologies such as genomics, which are transforming cancer care?

We cannot make the technology fully available for everyone at the same time and at the same pace, so it is important to prioritize. Thinking about genomic data and the impact on cancer treatment and risk stratification, people should know that the genomic data belongs to them. This is not part of the research community, not even the healthcare community. It’s their data, they should be able to retrieve it if they want to. It is important that people are aware of their rights and responsibilities because genomic data is very personal. If we think about young people with cancer, who might want to access jobs later in life or get health insurance, people should be informed when they are providing this data to the health system for diagnosis and treatment, that their data will be protected and that they have the right to. It is important for people to break the fear of data sharing. We go back to education and literacy and involve people in all steps of the process.

• Are there any examples of good practices from your country that could be implemented in Central and Eastern European countries? How has Portugal progressed when it comes to the implementation of the objectives of the Cancer Mission?

In Portugal we have the National Cancer Hub which works in synergy with the EU Beating Cancer Plan, coordinated by the Agency for Clinical Research and Biomedical Innovation and the Directorate General for Health, gathering representatives from both research and health ministries. The Hub’s actions are implemented by different groups. A policy group that unites key decision-makers, and a stakeholder group with 400 representatives from healthcare, research, and communities. A plan for this year is to create and moderate a new group called the Citizens and Patient Forum. In the first phase, the goal was to engage the community already involved in cancer care and break silos with the classical agency, create awareness among the policymakers regarding the opportunities in Europe and how could this Portugal benefit from this. Now that we have decision-makers engaged with the Mission on Cancer, we are ready to move to the next phase. Now we go to the individual level and involve patients in activities that emerge from the EU Commission and those organized by the National Cancer Hub.

• What does future cancer control look like 5 years from now, in your opinion?

I would like to appeal to a motto of A cancer-free society, but it is quite ambitious to think of this. However, we know that more than 50% of cancers are preventable, most of those are determined by external factors such as smoke, UV lights, work-related conditions, mining, chemicals exposure, and so on. At least for these ones, I would like to see a dramatic decrease in the level of exposure. If we reach 25%, this will have a huge impact on the lives of everyone, as well as on the economic and healthcare system. If we think that side by side with the cancer revolution, we see the revolution in genomics, you can also think about the 10% of cases that are caused by genomic mutations.

If we can screen for those genetic conditions and become aware that they exist, monitor the evolution of cases, and control the external factors, then we would see Europe as a much better place when it comes to cancer control. We cannot control cancer from developing but screening for genetic conditions and controlling of external factors could make a difference. We know a lot of things in the field of cancer, and with all the knowledge implemented we can do a lot of things in the years to come.

We are witnessing a revolution in oncology. I remember more than 30 years ago when we gave up the previous political regime and started thinking of unthinkable things. Then we had a momentum, we lived a historical moment that changed our lives forever. Probably this is the perfect place to say this, as we are standing in the University Square in Bucharest, where the revolution started. And we are also living a similar momentum in oncology because we have a chance to think beyond the death penalty which cancer was in the past, we have a chance to cure several of our patients and give promises to those who at this point cannot be cured.

We are living through many societal changes, many of which are highlighting the importance of reforming the healthcare systems and more importantly redefining what we understand by health and disease. In the European Union, there is a commitment for the years to come under the ambitious Horizon programme, aiming to address the major challenges citizens face in their daily lives. More than €600 million will be invested in the five EU Missions in 2023, as part of the Horizon Europe framework programme.

Cancer is the first disease that changed the EU’s involvement in healthcare. From a Moonshot approach to a Plan dedicated to cancer, now we live the momentum when all this can become reality in all member states. The Mission on Cancer launched on 29 September 2021 aims at improving the lives of more than 3 million people by 2030 through prevention, and innovative treatments, and for those affected by cancer including their families, to live longer and better.

I had the honor to meet Prof. Jeliazko Arabadjiev, the first Balkan in the EU Mission on Cancer Board, Ambassador for Bulgaria, Romania, and Lithuania, during an event organized in Bucharest by the Executive Agency for Higher Education, Research, Development and Innovation funding (UEFISCDI), ”Working together for a quick and diagnosis and better treatments for cancer EEA & Norway Grants contributions to the EU Mission Cancer”.

An oncologist by profession, Prof. Arabadjiev explained how the Cancer Mission implementation should look in the Central and Eastern European countries (CEE region), discussed his priorities, and shared his motivation to make the voice of the Balkans heard at the highest level to transform the lives of citizens and cancer patients.

• Transformation of culture and communication are key objectives in the Mission implementation Plan. As Balkans, we share a cultural background that influences the way we relate to cancer. How do you see the objectives of the Mission being implemented in the region and maybe the perspective of building a CEE Cancer Mission Network?

Bulgaria and Romania joined the European Union more recently, and we made huge efforts to make sure we fulfill the criteria for joining the EU. I believe that citizens in both countries are happy we are part of the EU. Unfortunately, we might not have been prepared for this because being part of the EU requires a specific behavior that is different from the cultural heritage, we Balkans share.

When it comes to cancer, we need to overcome the stigma we lived with for decades. I remember a time when cancer was a disease nobody wanted to speak about and was considered a death penalty.

My grandmother died of colorectal cancer 42 years ago. I remember she was diagnosed in November and died in January. At that time. once we heard the diagnosis, the whole family went to tears. The only option was chemotherapy and there was no support from society, no psychological support, no program to help the patient, no innovative treatment, and no personalized medicine.

I became an oncologist because oncology reflects the best innovation society expects from science. I speak as a board member of Cancer Mission but also as an Oncologist. I can use my knowledge of cancer and the opportunity to be the first Balkan Oncologist elected to the Board of the EU Mission on Cancer. I have great plans on how to synchronize our efforts and create the types of synergies that the EU Commission expects.

All recommendations from the first Board Mission on Cancer and all efforts of the current board are towards changing the perception of cancer in countries like ours. We need to battle the inequity not only to ensure access to personalized treatment but to all aspects of the disease, from the perspective of cancer patients as well as the perspectives of the family. The EU Beating Cancer Plan and Mission on Cancer will tackle the inequities between member states. This will be very beneficial for Balkan countries because we will get access more quickly to cancer care. But we need to speak up about this, to encourage transborder collaboration.

• Citizen empowerment in the CEE can be a challenging task because the patient-doctor relationship is a traditional one with many inequalities specific to the area. How to change the mindsets of citizens to engage actively when it comes to their own health?

We need to provide citizens with a proper roadmap of their disease and a proper outline of progress, and also for relatives and family. Cancer is more than the relationship between oncologist and patient. We need to ensure the continuum of cancer care, which doesn’t include only treatment. We need to make sure patients and citizens get the full benefits out of cancer care, the way it often happens in Western Europe. The Implementation Plan outlines every aspect needed to achieve this.

We need to establish structures and involve stakeholders in this process of synchronizing cancer care in our countries so we can manage to implement all that. The first board tackled all the problems with cancer patients and outlined the measures we need to take in our countries. The mission of this Board is not only to show things but to propel the action, to achieve all that we put in the implementation plan.

Cancer will be best treated in a multidisciplinary team, and in a diverse way, which will attract stakeholders who were not visible before. I am talking about insurance companies, social care providers, and such stakeholders. We need to encourage cooperation between institutions, this will make things happen. Unfortunately, we need to consider our cultural background and understand the differences from the Western countries, but we have a chance to learn from best practices implemented in other countries and recognized at the EU level. It is a very beneficial time for us. We don’t have to recreate the wheel or find hot water.

• How can we ensure that disruptive technologies such as genomics and data science make full impact in the regions since there are major gaps to be covered?

We are lagging behind other countries because we do not have proper cancer registries. We need to create a proper organization to restore or implement cancer registries and digitalize them. There is no wonder there are so many topics dedicated to digitalization in Horizon Europe.

At this point, we have the technology to get the full genomic profile of a tumor. Once we find the mutation, we can find a truly effective treatment, which should be available for all those who need it. So far, genetic testing has been left in the hands of the health authorities, ministries, and national health funds. Both are not prepared for such an extent of knowledge, because so far genetic testing has been expensive, and are not ready for the cost of the treatment informed by genetic profiling.

We need to start discussing this with the health authorities, educate them, we need to show them in a very professional way the benefit for patients and for citizens, who are not patients yet, and for society. And also, from an economical point of view. Let’s say we have a patient in his 40s and if he is put on a personalized treatment he can live many years, with a proper quality of life, and the capacity to work and be an active part of society. We need to start explaining this to the institutions and brainstorm with them. We cannot afford to miss genomic profiling just because there is no money for this.

We don’t have just oncology anymore, we are not <<chemotherapists>> – how they used to call my profession 20 years ago. Genetic testing is crucial. We are oncologists who can offer a precision approach to our patients.

At the turn of the millennium, The Human Genome was completed achieving an ambitious goal that was assumed to unlock the mysteries behind many common and rare diseases. The change was even more profound. There is so much variation that it is increasingly difficult to define health. Genomic data has unique features (can be inheritable, permanent) which lead to disruptions: moving away from treating people as averages, understanding drugs response, new models of risk prediction, making n of 1 therapies, understanding the impact of environmental factors on the genome and understanding the implication of the genome in society.

Fast forward to 2022: Today, a genome can be read with high accuracy, edited, and even rewritten. Genomics is redefining every medical specialty and changing standards of care on the whole continuum of care. Science can go even further: we can analyze biological molecules from multiple angles even at the level of single cells. Over 1000 omics have been described so far allowing a high-definition understanding of different sets of molecules that make up human biology.

Now, we are witnessing rapid developments towards a new dimension of redefining disease, health and society through new lenses: multi omics. Integration of biological data, along with all the other data that define a person’s health and well-being can become the foundation of truly personalised medicine.

This new dimension is unachievable without another longitudinal science – data science. Biological data needs to be translated in a new alphabet to show value, the one of digital tools and technologies.

The value can mean better prediction of the transition between health and disease, on an individually tailored basis.
A complete biological system can be modeled by adding all these layers of information with the help of AI and emerging digital technologies.

We are not sending ships to space multiple times to see if it works. Learning from other sectors in which the digital transformations allow streamlines of end products through digital models, it won’t be long until each person can have access to his/her digital twin to help tailor the best medical intervention.

Medicine is moving from sole intuition, averages and Ivory Towers, to integration, transdisciplinary approaches, and individuals. People are already bringing their genomic information to the attention of the clinician. And this is only the beginning.

It should be our mission – as medical professionals, students, patients, caregivers, citizens, to become contemporary with these changes. We can all become patients, caregivers, and vulnerable. Maybe it is time to use the key word more often – citizen.