ReThink Health


Hugo Soares, on the vision behind ECHoS project – citizens’ engagement and non-traditional stakeholders to reach Cancer Mission goals

The Mission on Cancer set an appeal for member states and associated countries to create National Cancer Mission Hubs designed based on the idea of involving all relevant stakeholders, including citizens, in cancer-related policy dialogues. ECHoS (Establishing Cancer Mission Hubs: Networks and Synergies) is a project aiming to ensure the implementation of the Cancer Mission activities in all member states by establishing and developing Cancer Mission Hubs operating at national, regional, and local levels. The ambition is to create a strong and cohesive network, aligned with the Mission on Cancer and Europe’s Beating Cancer Plan.

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.

Hugo Soares
  • 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.

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