European Health Data Space: Working together to overcome inequalities in the EU (Guest blog)
11.05.22
European Health Data Space: Working together to overcome inequalities in the EU (Guest blog)
Countries with greater skills, knowledge and capabilities will be able to share their wins with countries which have different or developing skill-sets – the very essence of teamwork! This is Europe #EUnite!
Have you ever experienced the thrill of a ‘buzzer beater’ at a basketball game? As the world passes in slow motion, a stadium full of people collectively hold their breath before the silent anticipation breaks into a scene of joy and sorrow all at once.
I find the buzzer beater represents the most important trait of any winning team: resilience. Successful basketball teams have a ‘togetherness’ that is built through resilience and overcoming inequalities, collectively.
Now, I never made it to the NBA, but I have transferred my passion for building resilience and fighting inequalities to building sustainable healthcare systems and improving the future of eHealth. I strongly believe it will take practice and dedication to deliver the change we want, need, and deserve.
One area we need to address is the disparities in care between the Eastern and Western EU Member States. Having been born and raised in a country which only joined the EU in the past two decades, I have experienced these healthcare inequalities firsthand.
One area we need to address is the disparities in care between the Eastern and Western EU Member States. Having been born and raised in a country which only joined the EU in the past two decades, I have experienced these healthcare inequalities firsthand.
Fortunately, the Commission has identified healthcare inequalities in the EU as one of their main priorities for the coming years. Several initiatives are going on and we are seeing positive signs coming from the European Commission, but is it enough and what barriers should we be prepared to face?
The European Health Data Space: tackling inequalities through collaboration
Last week the European Commission proposed a new governance framework for health data: the European Health Data Space (EHDS). This initiative will aim to connect national health systems across Europe to facilitate the secure and efficient exchange of health data. This tool, if developed based on principles of equality, will become one of the main allies to fight health inequalities in the EU.
It comes following two intense years in which the COVID-19 pandemic highlighted major disparities between EU Member States’ healthcare synergies and data sharing. Only half of Member States have a national electronic health record (EHR), not to mention a lack of data infrastructure and interoperability across the Union.
Disparities in the access to cancer treatment persist across the EU with differences in survival up to 25% for the same disease and at the same stage of illness between different member states [1]
The EHDS will create an exchange which should foster evidence-based care, promote informed health policy decision making, reinforce healthcare delivery and encourage data re-use across the EU. This will translate into Member States and industry sharing the research and knowledge and to collaborate on better solutions for patients in the EU.
Countries with greater skills, knowledge and capabilities will be able to share their wins with countries which have different or developing skill-sets – the very essence of teamwork! This is Europe #EUnite!
But, the EHDS faces challenges to implement a flawless system, primarily due to the Member States entering the game with different skills.
The Big-Three blocking the EHDS
While the EHDS would be over time a ‘slam dunk’ against health inequalities in the EU, there are certain challenges we need to be prepared for – a group I like to call the Big-Three:
- Standardization: Unified Electronic Health Records should be introduced to allow medical records to be easily shared across the EU.
- Interoperability: The EU should legislate for connected data-sharing systems throughout the EU to allow greater cooperation and integration between Member States.
- Fragmentation: EHDS programs need to overcome GDPR limitations and harmonize applications to guarantee efficient health data sharing between Member States.
We need to keep these Big-three central to our strategy if we want to ensure EHDS is successful when it comes to improving healthcare systems across Europe and reducing inequalities in care.
#EUnite an All-Star team
Continuing my basketball analogy, in this scenario, the European Commission take the role of Coach for the EHDS. Assembling and leading a winning team not only requires recognition of the strengths and weaknesses of your players, but the ability to match them together in a complementary way. Aware of the challenges ahead, the EHDS should acknowledge which of its ‘players’ have the necessary strengths to help overcome challenges for:
- Patients: A group that is underrepresented even though they are willing and eager to participate and shape the future of healthcare through data sharing.
a) Highlighted fact: As an example, 95% of rare disease patients are ready to share their health data compared to 37% of the general population[2]. - Member States: It is crucial for Member States and the EU to find common ground on decisive issues, such as GDPR. The EHDS can’t afford to operate centrally and Member States need to be willing and active participants from the start to create the much-needed network.
- Academia: Too often benched from the policy making processes, academia will play an essential role in the development of an efficient EHDS. They know what it takes to implement effective health data sharing and standardization of Electronic Health Records.
- Industry: Industry must go beyond its role as a developer of technology and medicines, and act as a collaborator on broader initiatives, driving economies of scale and serving as a mentor and supporter from upstream ideas through proof-of-concept projects, to full commercialization.
One team, One goal
Through the EHDS, there is a real opportunity to improve and standardize healthcare across the EU to help remove inequalities. However, this will require every ‘player’ to understand their role, to contribute and collaborate, and most importantly, to be resilient. Just as Phil Jackson was able to create an environment for Michael Jordan’s once-in-a-generation talent to be enhanced by his Chicago teammates for historic wins, the EHDS will need to create an environment which inspires collaboration of all relevant stakeholders, from policymakers and healthcare professionals to researchers and pharmaceutical companies to deliver better health for EU citizens.
#Togetherness #HealthisWealth #EUnite