Healthcare research is challenging due to fragmented data and varying national regulations. To address this issue in the children’s healthcare domain, the Pediatric Health Data Space connects hospitals in a mutual trust network.
Regulatory requirements and a lack of high-quality data make hospital benchmarking, and medical research challenging, especially for those working on rare pediatric diseases.
Individual hospitals often have only a few cases of these diseases. Research across multiple hospitals is crucial, but it’s slow and resource intensive. Researchers must navigate unharmonized data permit processes, with each country having unique demands. This leads to multiple permit iterations and long processing times.
The absence of standardized data models across hospitals adds another layer of complexity. Hospitals may use different systems and formats for their data, making it a challenge to combine and analyze research results. This fragmentation lowers the potential for discoveries and advancements in pediatric healthcare.
In the EU, strict privacy rules and regulatory requirements have increased the complexity of sharing and using health data. In addition to general data processing regulations set by the Data Act, Data Governance Act, and Data Services Act, the EU is also in the process of adopting a new regulation called the European Health Data Space (EHDS). It aims to create a unified framework for processing health data across Europe.
While the EHDS helps to align the European regulatory space on secondary use of healthcare data, it does not solve the major issues around diversity of data models, unaligned data permit processes, or the need for sustainable business models and scalable governance frameworks. Effective cross-border collaboration in healthcare research will remain an issue even after adoption of the EHDS.
Introducing the Pediatric Health Data Space (PHDS)
To overcome Europe’s health data challenges, some member hospitals of the European Children’s Hospital Organization (ECHO) have jointly started to work on a project called the Pediatric Health Data Space (PHDS).
This groundbreaking initiative aims to revolutionize the way hospital benchmarking and federated research are approached in healthcare. The PHDS provides harmonized data permit and data processing capabilities to hospitals and researchers. It enables hospitals to exchange benchmarking data, providing valuable insights into clinical and operative practices. The PHDS also enables researchers to run federated analytics and machine learning algorithms on multiple hospitals’ data, speeding up time to results and overcoming the limitations of isolated data sets.
The first iteration of the PHDS is being developed in the PHEMS project, funded by the European Health and Digital Executive Agency (HaDEA). The design of the PHDS ecosystem comprises governance mechanisms, scalable and secure technical architecture as well as sustainable business models that ensure the long-term viability of the ecosystem and its participants.
The primary roles in the PHDS are that of the data controller, the data user, the workspace provider, and the ecosystem orchestrator – a neutral party who coordinates the operation of the governance model and shared services. Data controllers are primarily hospitals but may also include biobanks and other healthcare organizations that hold healthcare data. Workspaces provide researchers and hospitals with tools to access and engage with other network participants. The Ecosystem Orchestrator provides common shared services to all network participants, which help reduce the onboarding costs and simplify many of the complexities related to harmonization, data exchange and establishing trust.
To enable faster processing times and easier permit processes, the PHDS uses a federated approach to data processing. Researchers are not given direct access to patient data, but they are provided with tools to collaborate with hospitals to agree on the used datasets and the processing algorithms. The chosen processing algorithms are verified and executed by the data controllers in their own controlled environment on the approved dataset. Results are validated and released after thoroughly verifying patient privacy. This digitalized and harmonized approach results in faster time to results, lower total processing costs while maintaining high control over privacy and security.
Hospitals and other data controllers will need to be equipped with the data management capabilities to participate in these types of ecosystems. Tietoevry Care’s Lifecare Data Platform plays a crucial role in providing such capabilities. The platform, designed specifically for healthcare, helps hospitals to ensure that their data is accessible, secure, and ready for analysis, reducing the manual effort required of the analytics staff. By participating in the Pediatric Health Data Space, we are dedicated to pioneering capabilities that enable federated research on top of our platform. Our goal is to unlock new opportunities for our customers as the regulatory space develops and initiatives like those planned around ECHO come to fruition.
Unlocking business opportunities with the Pediatric Health Data Space
The novel use of a decentralized network model enables the ecosystem to cater to a wide range of needs, opening new opportunities for care optimization. To ensure sustainability and growth, it’s critical that scalable business models are included as part of the ecosystem’s design. The goal is to create a self-perpetuating growth cycle, as described in the figure below:
- As new hospitals join the ecosystem, the data pool becomes richer and more comprehensive.
- Better data attracts more interest and demand from hospitals, researchers, and businesses, which in turn generates more business for workspace providers eager to bring in new customers.
- As more researchers utilize the ecosystem in research projects, the potential for discoveries increases. This further enhances the business potential for data controllers.
- Increased business potential encourages even more hospitals to join the ecosystem, perpetuating the cycle of growth.
The Pediatric Health Data Space represents a transformative opportunity for healthcare. By fostering collaboration and innovation, the ecosystem benefits the healthcare industry through discoveries while creating a thriving business environment for all the participants.
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With extensive experience in product management, healthcare regulations and cloud data analytics Teemu is a seasoned expert, who seamlessly bridges the gap between innovation and compliance. Teemu is committed to driving excellence and fostering progress across the industry via initiatives such as the Paediatric Health Data Space developed in PHEMS project.