Unlocking data and embracing digital technologies to transform citizens’ health and wellbeing
If the coronavirus pandemic and Europe-wide lockdowns taught us one thing, it is just how reliant we all are on digital technologies – including for our own health, and that data was in the right place at the right time to answer the right questions.
Nigel Hughes is Scientific Director at Jannsen Research and Development (Johnson & Johnson), a Corporate Knowledge Partner of All Policies for a Healthy Europe.
Digital health can have a transformational impact on the well-being of EU citizens: from telemedicine enabling safe remote treatment of patients, to health data access allowing tracking and treatment of diseases, and Artificial Intelligence enhancing clinical decision-making. In April 2018, a European Commission Communication on the Transformation of Digital Health and Care stated the following: “Digital solutions for health and care can increase the wellbeing of millions of citizens and radically change the way health and care services are delivered to patients, if designed purposefully and implemented in a cost effective way.”
Yet, to reap the full potential of digital health solutions, all EU citizens must be able to access, understand and trust the far-reaching benefits that new technologies can bring to their lives. Therefore, the publication of the EU’s Digital Services Act is a key enabler to increasing such confidence among European citizens.
Digital literacy is the cornerstone for building better quality healthcare and improving wellbeing. Therefore, citizens must be educated about the societal benefits of digital tools and their potential to bridge health inequalities. They need to be taught how to understand and interact with these new technologies – particularly AI – and must be empowered to take control of their own health. Patients, healthcare professionals, schools, the private sector all have a role to play and will need to rely on targeted learning tools, curricula and life-long training programmes.
More initiatives like Data Saves Lives – a multi-stakeholder project raising awareness about the importance of health data – should be encouraged and scaled-up.
As citizens learn to trust in the possibilities of the digital transformation and become more aware of the benefits of health data sharing, they also need to know that a trustworthy system will be put in place to ensure the privacy and security of their data. At the same time, measures should be taken empowering citizens to access, manage and share their health data across borders, and they should be involved in the making of policies affecting their lives.
Leveraging health data is faced with the double challenge of balancing citizens’ need for privacy and security with regulatory frameworks that promote research, innovation and patient empowerment through the use of personal health data. However, as the Chair of All Policies for a Healthy Europe’s Digital Working Group, Bleddyn Rees highlights: “The pandemic has demonstrated the complete failure by countries to properly prepare for a pandemic. We do have to realize the need for data exchanges and collaboration between Member States. It cannot have been more starkly demonstrated.”
Engagement of citizens as well as of patients, healthcare professionals and the private sector is particularly important to ensure that the development of AI technologies is ethical and geared towards improving well-being. AI has the potential to improve people’s lives from prevention through diagnosis to treatment, home care and public health management. Research, funding and public dialogue is crucial to facilitate the take-up of AI for healthcare, and at the same time ethical guidelines will be instrumental in ensuring safe, reliable and trustworthy AI. This is encapsulated with regards to innovation in transparent or explainable AI.
Solutions to work with health record and allied data at scale, incorporating both solutions to preserve security and confidentiality, i.e. privacy by design within the GDPR, as well as technical solutions to facilitate bona fide research already exist and are in development. For instance, the European Health Data & Evidence Network (EHDEN), an Innovative Medicines Initiative project, is building long term infrastructure under the Findable, Accessible, Interoperable, and Reusable (FAIR) principles to keep data local behind its firewall, harmonized and with standardised analytical tools. This so-called federated network retains local control and governance, whilst being able to facilitate a network where no data moves, but the question moves to the data, and information derived is aggregated.
If deployed and adopted at scale, AI applications in healthcare (from prevention and diagnosis to treatment and care management) have the potential to save lives, bring economic savings to our undernourished healthcare systems and free up valuable time of healthcare professionals which could be dedicated to more personalized care. However, to ensure that the development of AI tools is ethically and responsibly improving healthcare delivery and citizens’ well-being, a multi-stakeholder approach is key.
Digital technology should become an enabler to support equal access to care across people and regions and avoid increasing the digital divide. Yet, whether this digital potential will lead to tangible transformation for the lives and well-being of all Europeans depends on strong policies around data, people and technology which are inclusive and sustainable. Accelerating the development and adoption of accessible, safe and people-centric digital health solutions should be an integral part of the next steps our EU leaders will take to shape our digital future.
Read All Policies for a Healthy Europe’s full Policy Paper calling on the European Union to empower citizens to reap the benefits of the digital transformation of health & wellbeing.