FAQ for Citizens

IDERHA aims to improve how health data is used in Europe to support better healthcare and research. The project will:

• Create a secure system where hospitals and research centres can connect and share health data.
• Use anonymized patient data and Artificial Intelligence (AI) to improve early detection of lung cancer.
• Develop digital tools to monitor patients at home, during treatment or after hospital treatment.
• Improve international data standards to support cross-border research.
• Provide recommendations for future health data policies in Europe.

For patients:

Better use of health data can lead to improved patient outcomes and patient’s journey through earlier diagnosis of diseases. Additionally, home-monitoring tools make it possible to perform part of the care at home, which can reduce the number of hospital visits for patients and improve patient safety and reporting. 

Earlier detection of lung cancer will give better quality of life and higher rates of survivability for lung cancer patients. 

For the economy:

Lung cancer is the most expensive cancer in Europe. New technologies such as wearables and digital apps can help reduce costs by supporting care at home and early detection of disease can reduce the cost of treatment over time. Early detection of disease will reduce health costs and work-related costs. 

For science and regulation:

Lung cancer is often diagnosed too late. IDERHA aims to improve early detection and support better scientific and regulatory decision-making.

For society:

Earlier diagnosis and home monitoring can improve quality of life for the patients and caregivers affected by lung cancer today and reduce the overall impact of lung cancer. By using lung cancer as a use case, we aim to develop methods that can be used for many other diseases. 

Lung cancer is one of the most common cancers in Europe and is often a “silent disease”, meaning it can develop without clear symptoms and diagnosis often. IDERHA focuses on lung cancer to show how combining health data and artificial intelligence could support earlier detection and better patient care.

IDERHA mainly uses information from healthcare providers, such as:

• Electronic health records
• Blood tests and scans
• Pathology and radiotherapy data
• Patient-reported information
• Environmental data
• Clinical and molecular research data

The data helps IDERHA to:

• Show the benefits of combining different sources of health data.
• Improve tools and services that connect hospitals and research centres safely.
• Make health data easier to find, access, and reuse for legitimate purposes.
• Explore how real-world data can improve lung cancer care.
• Develop solutions and policies that can also be applied to other diseases.

IDERHA protects personal data by:

• Following all (future) European and national laws.
• Complying with regulations and ethical norms by good governance and oversight. 
• Using strong privacy methods like pseudonymisation and anonymisation.
• Securing all data access and storage.
• Training project members on data protection.

Only project partners, and only under strict rules. Some data may remain restricted if needed to protect privacy.

The Consortium Agreement will include partner rights and timescales for data-sharing. IDERHA may keep certain datasets closed, following the principle of 'as open as possible, as closed as necessary'. Consortium members will have access to the data, regulated by appropriate authentication and authorization services. The data within IDERHA will be shared and made available through a secure and encrypted channel.

IDERHA addresses risks by:

• Involving many stakeholders early, including patients and healthcare professionals.
• Working on clear agreements, including cross-border data sharing.
• Identifying risks in policies and technology and adapts as needed.
• Using a flexible consent model.
• Inviting new partners to join the platform.
• Organising events to increase engagement.

IDERHA collaborates with major healthcare organisations to ensure responsible data sharing. A patient advisory board provides input.

IDERHA is funded by the Innovative Health Initiative (IHI), a partnership between the European Union and health‑industry organisations.

• The methods developed for lung cancer can be used for many other diseases.
• Early detection and remote monitoring can reduce costs, improve survivability, and improve care.
• The open platform will remain available for high‑quality research and can welcome new partners.