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

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

INTERVIEW

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How can we convince them to lead healthier lifestyles?

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

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

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

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

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

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

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

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

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

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

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

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

What are the barriers that healthcare professionals need to overcome?

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

And regarding the management of health information?

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

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

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

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

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

OECD representatives: Caroline Berchet and Candan Kendir

INTERVIEW

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

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

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

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

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

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

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

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

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

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

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

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

What about the second country? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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