The NextGen project kicked off at the beginning of 2024. MyData Global teamed up with clinical research centres, universities, professional associations, SMEs and non-profits in this EU Horizon Europe project to develop the next-generation tools for genome-centric multimodal data integration in personalised cardiovascular medicine.
The main trends in global demographics and health impact on the strategic and operational setup of healthcare systems and personalized medicine is emerging as a crucial strategy for improving treatment of diseases taking into account the characteristics of each patient and at the same time enhancing their quality of life. This involves tailored approaches for prevention, diagnosis, monitoring, and treatment, which are more cost-effective.
Clinicians, doctors and healthcare professionals need the support of data to pursue personalized interventions, and therefore it’s imperative to integrate various data types, known as multimodal data, supported by artificial intelligence algorithms. Genomic data, in particular, holds significant individual-specific and information-rich insights and is becoming more readily available for practical and cost reasons.
Address challenges to data privacy and governance
There are major challenges to privacy and governance when it comes to integrating multimodal data, in addition to diverse standards, distinct data formats, and the complexity and volume of underlying data.
Considering the specific field of heart disease, personalised medicine has an extremely vast potential to benefit from personalised medicine. With the latest developments in computing power and algorithm development, now is a great time to make available personalised treatments using huge amounts of data available.
What is MyData Global’s role?
MyData Global wants to bring a human-centric approach to data management and governance into the NextGen project. We are contributing to three main tasks:
- To participate in the Regulatory, Ethics, and Governance Board and develop frameworks for data governance that are compatible with key reference EU initiatives, such as the European Health Data Space (EHDS) and European Open Science Cloud (EOSC).
- To facilitate broader engagement and exploitation with key stakeholders, establishing relationships and co-development strategies with other EU initiatives and projects.
- To contribute to the development of communications and dissemination strategies to reach target audiences and stakeholders, including policy-makers.
“At MyData Global, our mission is to empower individuals by ensuring that data management and governance are centred around the human element. In the NextGen project, we aim to integrate this principle by supporting the development of tools for personalised cardiovascular medicine that respect privacy and empower patients. Our goal is to help transform personalised medicine into a practice that is both effective and aligned with individual data sovereignty.” – Carlos Iglesias, Projects Lead.
Project goals
NextGen aims to make the most of these advancements by getting doctors, researchers, universities, smaller businesses, and professional groups to work together and develop ways to process huge amounts of individual health data to support personalised care of heart diseases. In this, NextGen faces a complex task to comply with privacy and rules about how data is handled, plus the different ways data is stored and used across Europe, and the sheer amount of information involved. The project adopts a privacy-by-design and integrated data governance model to solve this issue from the root.
NextGen’s approach to tools development will make it easier to combine data for eight different heart-related problems, working on the development of features such as:
- Bringing together different kinds of data and making it easier for researchers to work with them.
- Making sure that genetic information can be analysed securely alongside other medical data.
- Improving how computers learn from data spread out across different places.
- Making tools that doctors and researchers can use to understand genetic information better.
- Making it easier for doctors to prioritize important genetic differences.
- Managing large amounts of genetic data more efficiently.
- Making it simpler for researchers to find and work with medical data.
Conducting a thorough analysis of the current landscape, and considering ongoing initiatives, will guarantee that NextGen deliverables are forward-thinking and well-harmonised. The NextGen embedded governance framework and stringent regulatory processes will guarantee secure access to multiomic multimodal data across multiple jurisdictions, in alignment with initiatives such as the “1+ Million Genomes” and the European Health Data Space. Several real-world pilots will showcase the efficacy of NextGen tools and will be incorporated into the NextGen Pathfinder network, comprising five collaborating clinical sites. This network will serve as a self-contained data ecosystem and a comprehensive proof of concept.
Find more information on the forthcoming NextGen website. Check out the project info on MyData website, and the press release by one of the consortium members, the European Society of Cardiology.
MyData white paper on health data operators – work in progress
MyData Global has kicked off a series of monthly meetings and a parallel writing process from December 2023. We aim to showcase and describe the role of MyData operators with regard to health data and the European Health Data Space. As an end-product, we envision a white paper on health data operators to be published in Q4/2024.
If you want to know more, please contact isabelle.dezegher@mydata.org and teemu@mydata.org, or through the Slack #health-data channel.
NextGen Project partners
The EU Horizon “NextGen” project, under the European Health and Digital Agency (HADEA), is run through an international collaboration of clinical research organisations, universities, SMEs, professional associations, and representative organisations of civil society. Utrecht University Medical Center (NL) hosted on February 5thcoordinates a 21 member consortium including the Karolinska Institute (SE), Earlham Institute(UK), Wellspan Health (USA), Queen Mary University of London (UK), Scuola Universitaria Professionale della Svizzera Italiana(CH), EURECOM (FR), Göthe Universitat Frankfurt (DE), HUS (FI), University of Virginia (USA), Technical University Münich (DE), European Society of Cardiology (FR), Human Colossus Foundation (CH), HL7 International Foundation (BE), HIRO Microdatacenters B.V. (NL), Drug Information Association (CH), MyData Global (FI), DPO Associate Sarl (CH), DataPower Srl (IT), LiKE Healthcare Research Gmbh (DE), NEBS (BE).