Role-Players: The importance of patients in co-designing Europe’s future health system

Pandemics have played a significant role in shaping human history throughout the ages. Few people reading this today will remember outbreaks on this scale, but history demonstrates that while devastating, the current COVID-19 pandemic is not without precedent. However, despite history’s warnings, it still caught us off-guard and unprepared.

Having ravaged many countries socially and economically, healthcare systems across the world are still working tirelessly to contain the impact on people, despite the inefficient and inadequate available resources  and systems  organisation. Ultimately, COVID-19 has shone a harsh light on the unsustainability and known weakness of our healthcare systems  and highlighted once again the importance of a stronger  European public health policy designed to meet the needs of Europeans, beyond the pandemic.

Before this bombshell struck our daily lives and placed us in isolation, Europe was dealing with the significant challenge of delivering care for patients with serious, non-communicable diseases, and we still are.

The impact on patients with such chronic conditions has not disappeared despite the pressing need to eliminate COVID-19. While the situation has improved 18 months on, many patients are still facing added uncertainties and concern for their lives as their anxiety grows around how long COVID-19 will continue to negatively impact their access to care for their conditions. As the leading voice of patient  organisations  in Europe, we  have  collaborated with our members and patient advocacy groups across the continent to understand the patient perspective on the impact of the pandemic.

The detrimental effects  of the pandemic on timely access to treatment is confirmed by our findings with almost half of  patients having faced treatment delay and many experiencing treatment discontinuation. Another important challenge faced by over a third of patients was the lack of clear information and communication from national authorities and healthcare providers on the availability and accessibility of healthcare services and treatments during the pandemic. Since March 2020, we have continually called for improved and more timely access to healthcare for patients, not hindered by misinformation or other barriers.

The pandemic saw Europe initially unready  and quite fragmented  on a communication level, but overall the EU reaction has been positive, and showed increased collaboration between member states and with EU institutions.

EPF, with many other patient and civil society  organisations,  worked to provide as much clarity as possible during the pandemic  with the respective communities.  For instance, we established a cooperation with the  European Medicines Agency (EMA)  to promote and run public webinars on the COVID-19 vaccines, set up a dedicated resource center on our website and launched weekly newsletters to our members with information about ongoing studies.   With social media  nowadays, it is much more difficult to deliver a scientifically checked message, while it takes 10% of the time for someone to produce fake news. The importance of clear, timely and accessible public health communications has never been more pertinent in our lifetime.

While there must be an impetus to increase health literacy at a grassroots level, we can ameliorate current conditions by establishing clear communication channels between patients and their healthcare professionals.   Clear communication goes  hand-inhand with technology. We have learned from the past 18 months that  that the uptake of technology can indeed be timely, when there is collective effort of motivation and mobilisation from all  parties,  so we must not remain complacent.  We  still have not seen a systematic collection or sharing of “best practice” alternative access solutions such as virtual consultations, automatic prescription renewals etc. This is an important area where the European Commission can support Member States, with the involvement of patient organisations.

Digital transformation is already underway but to bring real value and true innovation, Europe’s future digital health tools and systems should start from patients’ priorities and be co-developed with patients. The proposal  of a European Health Union  lays out important building blocks to enhance European resilience towards future health crises, increasing preparedness, monitoring and emergency responsiveness.

From the patients’ perspective, the current proposal should be considered as a starting point to build better healthcare for the benefits of all Europeans.

The project for an impactful EU Health Union should go beyond crisis preparedness and cross-border threats. A true EU Health Union should be built on a wider structure, equipped with the right resources and instruments to address systemic challenges  that affected patients during the pandemic such as access to quality care and treatment, miscommunication, and the digital transformation of healthcare. Our vision is a Europe where patient organisations  are valued partners in creating equitable, person-centered, accessible, and sustainable healthcare systems. To enable patient organisations to play this role effectively and independently, co-production needs to be built into all EU-level healthrelated initiatives. The  EU  absolutely  cannot miss this  opportunity to learn from the COVID-19 crisis and listen to European citizens and patients to build a European Health Union founded on their needs. Pandemics may have again demonstrated again their  significant role in shaping human history but now it is time for patients to play their role in shaping the future of healthcare in Europe.