Programpunkter

When the Vitalis Conference takes place in May 2024 the new EU Regulation for the European Health Data Space (EHDS) may already have been finally adopted and entered into force. EHDS aims to empower the citizens when it comes to having control over their own health data. At the same time contributing to health care as well as research and innovation by providing access to relevant health data in an efficient and secure manner. Expected outcomes include for instance new innovative medical treatments and diagnostics, development of AI tools, and Precision Medicine, thus optimizing value from health data, for the benefit of individuals as well as society as a whole. However, there is no doubt that the implementation of EHDS also comes with substantial challenges of different kinds.This introduction will give an update on the status of EHDS, on preparative EU projects and describe EU and Swedish aspects on interoperability layers of legal, technical, semantic and organizational character.

EIT Health organised a series of 11 roundtable discussions across Europe, bringing together experts and stakeholders from across the public health, healthcare, and health data ecosystems. The presentation will summarize the key recommendations and findings on a European level, presenting results from the EIT Health Think Tank report launched Spring 2024. 

The European Health Data Space (EHDS) is an EU-wide initiative in digital health aiming at a more effective use of health data for healthcare services provision, research, innovation, policy-making and regulatory activities. While the proposal for a Regulation on the EHDS is being negotiated between the European co-legislators, there are a number of initiatives that have already been launched to prepare the ground for its rollout. In this presentation, the European Commission will give an overview of the state of play of the implementation of the EHDS.

Background, current status, and Swedish perspective of the cross-border services for Primary use in Europe.European initiatives to support the development and implementation of services for Primary use across national borders as Direct Grants and Joint Actions.The Swedish eHealth Agency is the National Contact Point for eHealth and prepares the Swedish cross-border eHealth services.

Discover the potential of the European Electronic Health Records Exchange Format (EEHRxF) for healthcare interoperability in the EU, as we delve into the XpanDH project's role in advancing the European Health Data Space (EHDS) regulations and bridging healthcare delivery and clinical research scenarios.

The presentation will provide an overview of how EHDS will affect the secondary use in Sweden and EU and how the ongoing EU projects will contribute to strengthen Sweden's ability to meet the requirements of the upcoming EHDS regulation.

A broad spectrum of health-focused communities are dependent on, as well as expecting more streamlined and effective solutions for secondary use of health data: rare disease and cancer research, health services research and public health, preparedness and response to health threats, to name a few.  With digitalization being both a priority and a success story in the Nordic region, the VALO project aims to deliver proof of how value from Nordic (digital) health data can be achieved and enhanced.

Summary of what joint action TEHDAS accomplished 2021-2023 and how Member States are preparing for the harmonised implementation of EHDS with TEHDAS2

The European Genomic Data Infrastructure (GDI) is dedicated to facilitate secure federated cross-border access to high-quality genomic and phenotypic data for research, personalized medicine and policy making. The presentation introduces the project and highlights the progress achieved by the GDI consortium, consisting of 24 countries, with a focus on the technical advancements.

Our vision is to shape the future of European healthcare through the transformative power of AI. We envision a healthcare landscape where innovative AI solutions seamlessly integrate with existing systems, enabling improved patient outcomes, enhanced healthcare delivery, and equitable access to quality care. By fostering collaboration, advancing research, and facilitating market access for trustworthy AI technologies, we strive to revolutionize healthcare and empower individuals and communities to lead healthier lives.Our mission is to accelerate the development and adoption of AI solutions in healthcare by providing a cutting-edge testing and experimentation facility. We are dedicated to creating an environment that enables AI developers, researchers, and industry stakeholders to collaborate, innovate, and overcome the challenges of integrating AI into the healthcare ecosystem. Through rigorous evaluation, adherence to regulatory requirements, and a focus on ethical and societal aspects, we aim to ensure the safe, effective, and responsible use of AI in healthcare settings.

During the spring of 2024 the EU Commission will most probably decide on the final version of the European Health Data Space, and also the timeline for implementation. The Centre for Health Data (CHD), which is part of Region Stockholm coordinates requests for health data for research and innovation purposes. This presentation will describe barriers and possibilities with providing health data during the current system, and how the EHDS may impact regional work with health data provision. 

Umeå University is, together with 79 European partners, part of the EUCAIM project, which with AI tools and intelligent algorithms will achieve more accurate and faster diagnosis and treatment of cancer by creating a European infrastructure for quality-assured, annotated image data and associated clinical data. In Sweden, researchers from Umeå university, Region Västerbotten, Uppsala (SciLifeLab) and Linköping University as well as Karolinska Institutet participate. The idea with EUCAIM is to create both a central and a distributed infrastructure, to support develop AI development by a robust, trustworthy platform for researchers, clinicians, and innovators to access diverse cancer images, enabling the benchmarking, testing, and piloting of AI-driven technologies. In this way the development of cancer diagnosis and treatment is supported and precision medicine is strengthened by development of precision imaging. Images and other data may remain in different hospitals, but everyone has access to the description of all data, and this in a GDPR-safe way. To create this, we need, among other things, to build secure infrastructures for data sharing and solve several legal challenges.

Description of the experience of setting up the French Health DataHubPresentation of progress, challenges and remaining work for the HealthData@EU pilot project

Pharmaceutical industry continues to evolve, the utilization of comprehensive health data has become pivotal in shaping the future of drug discovery. This talk delves into the multifaceted challenges associated with harnessing the potential of extensive human cohort datasets. Join us for an insightful exploration that aims to inspire thoughtful discourse, foster collaboration, and propel the industry towards a future where health data becomes an invaluable asset in the pursuit of groundbreaking medical discoveries.

The Middle East's healthcare sector is undergoing a massive digital transformation, fueled by the implementation of  plethora of mega health exchange projects and the rapid changes digital health regulatory frameworks . However, a critical challenge lies in the lack of skilled professionals in health data governance (HDG), hindering the region's ability to fully leverage its health data potential. The speaker will highlight the role of ZIMAM in addressing specific challenges and opportunities within the GCC healthcare sector to make the call for upskilling and cross-skilling talents to operationalize recently issued GDPR-like regulations and policies. The role these talents would be vital  to support adopting and adapting best practices in health data governance and data sharing as well as utilizing technology tools and services to support ethical processing and sharing of personal health information for both primary and secondary use.

This session will review the digital health transformation journey for Canada's largest province and its transition towards an open source-based data fabric model.

In this track, we have been presented work that is being done in different countries, often as a consequence of the EHDS proposal (or regulation, depending on how far along in the negotiations we are in May). Work is also being done in this area in other countries as well. As a last session of the track we are going to include representatives from the private sector. What are their opinions on the work presented, how will it impact their companies and what kinds of benefits can they foresee?