How do you see the role of patient organizations in the EU now and in the future? How can they work with governments and healthcare systems to enact meaningful change?
Nowadays, patients are crucial partners not only in the implementation and evaluation of healthcare policies, but also in their design. Within a Europe Union with 28 Member States and growing harmonised institutions, patients need strong, specialised and professional advocates to push on the crucial common problems faced by all patients and raise awareness on the unbearable national and local situations existing. That is why organisation like ECPC provide European stakeholders with an invaluable “access point” to true patients needs. Through ECPC, European cancer patients can make their voice heard in key discussion tables at the European level, where many decision on health take place.
What is the biggest challenge facing patients in the EU today? Do you think the region is equipped to handle this challenge in the future – how so?
The European Union is a beacon of rights and freedoms for the whole continent. However, there are still unbearable inequalities in the way EU’s 500.000 million citizens access healthcare, particularly cancer treatment. Inequalities in access to healthcare have different and varied faces: drugs are not evenly priced in all Member States, and in several countries essential drugs are not available at all. Patients’ freedom to seek healthcare outside their country is declared by EU law, but cross-border healthcare remains complex, bureaucratic to obtain and in several cases too expensive for the patient. Innovative, lifesaving treatments like immuno-oncology therapies are not quickly and safely made available to patients. In brief, there is a plethora of causes leading to unequal treatment of patients in Europe. Considering the overall high standards and effectiveness in curing cancer in Europe, it is unacceptable not to grant access to the best care available to all European citizens. The Cross Border Healthcare Directive can provide a partial solution to the problems, but I believe patients shall be formally involved in the very process of implementing the Directive, hence ensuring a more concrete application of the European norm.
Can we make any general conclusions about healthcare in the EU, or is the region too varied to be discussed as one entity?
Europe’s healthcare future is approaching a crossroad, pushed by two opposing trends. On one hand, patients and physicians recognise the need for more cooperation and harmonisation in the field of health in order to make our healthcare systems more efficient and equitable. On the other hand, Member States resist this harmonisation on the basis of national prerogatives and budget constraints. Hence the problems of European healthcare are both regional and global and we need to find a compromise solution that would increase accessibility and sustainability. We do not have to start this process anew: initiatives like the European Reference Networks can lay down models for further harmonisation of our healthcare systems.
What are some tangible ways that patients can become more actively involved in their healthcare?
I strongly believe in the power of patient’s advocacy. ECPC’s advocacy efforts are based on real needs and true experience: from this standpoint it is very difficult for policymakers not to take our voice into consideration. The European Parliament demonstrated to be a formidable partner in advocating patients’ rights. The European Cancer Patient’s Bill of Rights, ECPC Call to Action and several other advocacy efforts are finally bringing practical fruits. The European Commission has demonstrated a high level of sensitivity towards patients’ perspective, establishing the Expert Group on Cancer Control and including patients’ representatives in the CanCon Joint Action. My suggestion to patients associations would be to get in touch with their local Member of the European Parliament. That is what ECPC will help our Members to do during our next Annual General Meeting in Brussels, the largest cancer patients’ gathering in Europe in 2015.
Furthermore, patients can have a crucial role in the design of better clinical research programmes, particularly on quality of life.
However, such an important role requires solid and competent patients’ organisations. It is my strong belief that large umbrella patients’ organisations like ECPC can provide both the professionalism necessary to interact with European-level stakeholders and strong links with real life patients experience.
What role does preventative care play in an effective healthcare system? Does the EU do enough to prevent diseases before they start?
The European Union has been very vocal on the role of prevention, particularly through the promotion of healthy lifestyles. This is laudable and ECPC strongly encourages equilibrate nutrition, physical activity and screenings. However, prevention has many faces. In many cases, early diagnosis represents the most reliable weapon a cancer patient has to successfully beat his/her disease. For a cancer patient, either in remission or facing the treatment, prevention means avoiding the recurrence of cancer or preventing other chronic diseases. Effective screening is also the only reliable instrument we have to effectively reduce the incidence of cancer and therefore helping our health systems saving billions of euros. There is still much to do to bring effective early diagnosis and tertiary prevention and to all European patients.
What is the most promising element (the area that holds the greatest opportunity for improvement in the future) of healthcare in the EU?
Many of the problems European cancer patients face are related to the sharp decrease of resources allocated to healthcare. A sustainable solution would be to better integrate the promising eHealth and mHealth technologies into European citizens’ lives. ECPC believes that the development of eHealth and mHealth infrastructures and applications can effectively increase patients’ quality of life and treatment effectiveness, lowering the costs of traditional care. We are actively working to demonstrate this through eSMART, an EU funded project investigating the use of mobiles to monitor cancer treatment.
At the institutional level, as I mentioned also before, the thorough implementation of the Cross Border Healthcare Directive can create a true European space for healthcare services and ensure European patients’ freedom of mobility to seek state-of-the-art healthcare abroad.