IDERHA

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. However, accessing, integrating and analysing it is extremely challenging.

The aim of IDERHA is to set up an open platform that will facilitate the integration and analysis of diverse types of health data. The 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. For example, doctors and patients would be able to use the platform to visualise all the data relating to a patient and make decisions for their care. Meanwhile researchers would be able to use it to study diseases in unprecedented detail.

To focus their efforts, the IDERHA team will use lung cancer as a use case to design the platform. Lung cancer is responsible for some 400 000 deaths in Europe every year, around 20 %of all cancer deaths. The 5-year survival rate for lung cancer stands at just 13 %. One reason for this is that over half of all lung cancer patients are only diagnosed when the disease is already at an advanced stage. One of IDERHA’s tasks will be to use existing data to identify people who may be at high risk of developing lung cancer. It will then seek to accurately assess these people’s risk via low dose CT (computed tomography) scans.

Turning to people who have been diagnosed with lung cancer, IDERHA will use remote technologies such as wearables and digital applications to monitor their condition. Remote technologies capture far more detailed information, in real time, on a patient’s condition, as they go about their daily lives. This will make it easier for patients and their doctors to monitor things such as how well a treatment is working, or if there are any complications. This will allow for quicker decisions on any changes to the patient’s care pathway that may be needed. Finally, the project will make high quality lung cancer data available for further research.

The project will also work closely with patients and other health stakeholders to develop recommendations for appropriate data sharing to enable multi-stakeholder research.

The IDERHA platform will be fully compliant with both current and forthcoming legislation relating to health data, including the European Health Data Space (EHDS). It will empower patients, allowing them to decide for themselves who can access their data. Researchers will benefit from long-term access to health data, making it possible for them to generate new insights into health and disease. Data in the platform could also be valuable for regulators and health technology assessment bodies who could use it for their own decision-making processes.