Pan-EU Health Data Sharing Platform Takes Shape
Pan-EU Health Data Sharing Platform Takes Shape unknown
Progress has been made towards the development of what could become the first pan-European platform for facilitating access to and analysis of diverse types of digital health data for regulatory and health technology assessment (HTA) decision making.
Technical teams have now laid the cornerstone for the platform, according to the public-private-funded consortium that is working on the project, called IDERHA (Integration of heterogenous Data and Evidence towards Regulatory & HTA Acceptance).
They have created “an initial architecture graph of the platform,” said the consortium, whose pilot program is focusing on lung cancer.
The achievement, announced this month, is expected to eventually mature into an action plan for the technical experts and final platform architecture (project deliverables 1.1 and 1.3).
“It will also support the discussion of use cases and workflows, enabling IDERHA to clarify interactions of different personas with the data,” the consortium said.
Once completed, the EU-wide health data platform will link up multiple public and private data sources and put in place interoperable tools and services that will make it possible for key groups to use the data.
Addressing Key Obstacles
The IDERHA project was launched in April under the Innovative Health Initiative, which is a partnership between the EU and the European life science industries.
Its aim is to “propel health care innovation in Europe” by addressing the key obstacles to achieve appropriate access, sharing, use and reuse of digital health care data.
The plan is to develop an EU-wide health data space to enable connectivity to and access of digital health data, while simultaneously driving policy recommendations for data access and acceptance of real-world data for regulatory and HTA decision-making.
As noted by the IHI, recent years have seen “an explosion in the generation of health data” from sources as diverse as digital technologies, patient-reported outcome measures, clinical trials, and routine clinical care.
“This data has the potential to help advance both research and patient care,” it said. However, accessing, integrating and analyzing the data is “extremely challenging.”
Lung Cancer Pilot Program
Regarding the lung cancer pilot program, the IDERHA consortium said it would focus on key priorities of the Europe Beating Cancer plan, which include improving early cancer detection and the quality of life of individuals with cancer.
The pilot will link and analyze diverse data from along the continuum of a lung cancer patient’s journey – from early screening of those at risk of developing the disease to remote monitoring of late-stage patients to enable better care in an at home setting.
“Ultimately, the platform and policy recommendations will be disease independent,” the consortium noted.
The IDERHA consortium comprises 33 academic, clinical, medtech, pharmaceutical, IT and patient advocacy organizations as well as public authorities.
It is building one of the first pan-European health data spaces and is aligned with the implementation of the European Commission’s proposal for regulations on the European Health Data Space. (Also see "EU Industry Finds Glaring Gaps In Health Data Access Proposal" - Pink Sheet, 2 Aug, 2022.)