Author: Dr Vassilia Orfanou, CMO of Gaia-X
Editors: Gaia-X Editorial Team
During the Healthcare data innovation conference held in Brussels, on 21 June 2022, a white paper entitled: “Unlocking the Power of Data in Healthcare – a European vision” was presented and discussed. The new white paper called for the removal of the regulatory barriers to exploit the power of Artificial Intelligence (AI), to save lives and cut costs in healthcare.
According to the white paper, the pandemic accelerated the need for change and has provided a huge boost to the utilisation of technology in all fields, including healthcare, where digital health has become much more common. In parallel, consumers are becoming increasingly digitally informed, with wearables, connected gadgets, and mobile apps providing for direct or indirect health services and surely creating significant amounts of data.
Andrea Pescino, partner and founder of StratejAI that coordinated the white paper published by The Healthcare Data Innovation Council, said, “The pace of technology development allows us to process huge amount of data in minutes, extracting exceptional knowledge and insights, where only a few years ago it would have required decades. We need to unleash this opportunity working together in for bringing benefits to all.”
The white paper was presented by major actors of the healthcare community from Al experts, industry, and European institutions, to patients, pharma, MedTech companies, researchers, technology providers, and clinicians. One of the keynote speakers, Yiannos Tolias, a Legal Officer with DG SANTE, European Commission, said, “The abundance of health data combined with advancements in digital health including AI has created a promising potential to revolutionise healthcare. We all need to work together so patients can reap the benefits of this revolution.” The paper also states that data is simply raw material that need to be managed, curated, analysed, and connected to other sources to form “big data,” and then can become a key resource for advanced AI algorithms.
In a recent Gaia-X event on Health Data Spaces, Francesco Bonfliglio, CEO of Gaia-X, highlighted “Data is becoming central to the transformation of healthcare. It is one of the major features of innovation in medical research, in bettering patient care and optimising population health“.
What’s more, Jeff Bullwinkel, Associate General Counsel and Director of Corporate, External & Legal Affairs at Microsoft Europe, highlights, “We are working to make data secure and private; we need data to be as open as possible, usable, and empowering to create the value that the healthcare system needs.”
The paper clearly states that the opportunity AI presents is clear in different areas, including bettering population health management, supporting operations, and strengthening innovation, which could have a huge worldwide impact. This is because the global market was valued at $8.23 billion in 2020, but it is projected to reach over $194.4 billion by 2030, a CAGR of 38.1%.
The changes visualised in the white paper will form a new paradigm of the 4Ps (personalised, predictive, preventive, and participatory), that will allow the emergence of a value-based healthcare plan based on data. This is thanks to the quick development of IoT and analytical technologies that have created waves of high-quality data, a powerful tool that can bring out value at a speed that was unthinkable a few years back.
Ricard Martinez Martinez, Director of the chair of Privacy and Digital Transformation at the University of Valencia, mentions, “GDPR has not adequately addressed the necessary conditions for research with health data. National legislations are not homogeneous, each data protection authority defines its own criteria, and it is practically impossible to share pseudonymised data or personal data, especially when it comes to the analysis of large volumes of data.”
Unlike in the US where healthcare providers gain the property right of possession of data – in the EU, healthcare data are distributed across 512 million people. This healthcare data space has the likelihood of becoming and creating a competitive advantage for Europe with greater harmonisation in regulations and standards.
Additionally, the white paper highlights unfolding new methods of handling data. For example, the Gaia-X framework addresses the impact of decentralisation and self-sovereignty with a federated, distributed, and decentralised approach to initiatives. Jeroen Tas – Chief Technology officer of Royal Philips and Gaia-X BoD Chair, discusses that Gaia-X is the only initiative that develops a software framework of control and governance and implements a common set of standards, policies, and rules. He said, “Gaia-X aims to enable the future of European healthcare: federated, citizen-centric, and insight-driven. We are guided by the quadruple aim – better health outcomes, better patient experiences, more efficient care, and better professional experiences.”
Most recently, the Gaia-X event on Health data space, with title “Enable the future of health: federated, citizen-centric, and insight-driven!”, equally and fully addressed the need for a scalable and efficient health data space in Europe that is truly decentralised, citizen centric and insight-driven.
“We received an overwhelming response to this one-day virtual event that saw decision-makers come together to brainstorm ideas and create a framework towards establishing an insight-driven health data space”, said Francesco Bonfiglio, CEO of Gaia-X.
Bert Verdonck, Program Manager Health Data Spaces, Philips also highlighted “The multi-disciplinary keynote speakers addressed some of the key questions imperative towards building a decentralised health data space. The three use case themes – patient-driven measurements and outcomes, longitudinal patient records exploration and genomics, imaging and clinical data for cancer care and rare diseases – discussed in detail at the breakout sessions have emerged as priorities for the working group”.
The European Commission’s 2022 Data Act is key in this direction as well. It outlines the necessity for European common data spaces in health, energy, manufacturing, mobility, among others. The implementation of the Data Act will have several benefits for consumers and businesses alike. It creates a level playing field, creating new opportunities, providing better access to data, and providing lower prices.
In its 2021 Work Programme, the European Commission announced a legislative proposal for a European Health Data Space (EHDS) planned for adoption in 2022. The EHDS is essential for advances in preventing, detecting, and curing diseases from the perspective of patients as well as for informed, evidence-based decisions to improve the accessibility, effectiveness, and sustainability of healthcare systems.
Aside from the benefits of sharing and using data, the most recent white paper highlights some of the challenges. One of the first challenges is the regulatory framework – implying that many researchers or small startups cannot share data straightforwardly without the necessary legal skills. Furthermore, there is fragmentation between member states and even regions, and new upcoming regulations.
During the Gaia-X event on health data spaces, with title: “Enable the future of health: federated, citizen-centric, and insight-driven!”, held on April 4 it was shown that another challenge is data interoperability, where standards are coming up and have to be validated and widely adopted. Other challenges include semantic and technical interoperability, which are reasonably easier to tackle.
Going back to the recent paper, it also states that big data platforms can now match up to traditional and non-traditional data, obtaining results in days that a few years back forecasts would show several years needed for a result. What’s more, it is vital to comprehend there are huge differences between individual data and a big data platform. Thus, analysing collectively big datasets has a much higher value than analysing smaller datasets. And to get new approaches to crucial diseases, such as cancer, new vaccines, or protein development, data from many patients are needed, and this demands effective data-sharing across countries and regions. This is the only choice with unique, currently untreatable diseases.
A cultural change is required at all levels, from comprehending and promoting digital literacy, to the definition of effective privacy-preserving methods, to consolidating trust while not limiting the authentication of outcomes. Even though data ecosystems are already being formed, they require to be promoted and supported effectively, to become part of national and regional plans. This is where the national Hubs of Gaia-X and the Gaia-X Association can help.
In conclusion, several recommendations were provided in the white paper, some of which include progress in the legal framework on data-sharing and extensive data usage. Other recommendations were to support the development of central data platforms, allow a cultural change in the sector, and facilitate interoperability to solve data flow challenges, all of which are indeed tackled by Gaia-X.
 Further details are available here and through the dedicated event press release.