Health Outcomes Observatory ( ) Challenge Patient perspectives in healthcare are not listened to in a meaningful way. When healthcare professionals try to capture patient-reported outcomes, this process is fragmented and inconsistent. Lack of trust and incentives in sharing health data limit the ability to use digital technologies in healthcare and prevent the potential of AI in health being realized. Solution The Health Outcomes Observatory ( ) initiative was created by a multistakeholder public–private consortium that includes patients, healthcare providers, researchers, regulators and industry representatives. The initiative has two pillars. First, it focuses on deploying digital tools to capture patient-reported outcomes incorporating a common language to enhance health professional–patient communication that allows for shared decision-making and remote monitoring. This common language is being created through a multistakeholder consensus process and relies on adapting patient-reported outcomes to the digital world. Second, focuses on creating a data governance model that ensures patients remain in control of their data while health data can be analysed and researched when appropriate. This is being implemented through the creation of health data trusts known as “ observatories”, independent legal entities with multistakeholder boards that serve as guardians of patients’ health data and operate a secure data infrastructure. Hospitals that partner with the observatories can participate in a healthcare learning ecosystem and benefit from access to digital tools to facilitate communication with patients. Independent technology partners deploying technologies to facilitate health professional–patient communication can join this ecosystem when they meet a set of criteria and offer their services to hospitals and patients. Outcome There are now four national observatories operating as health data trusts in Austria, Germany, the Netherlands and Spain and an umbrella organization, the Pan-European Observatory, in Denmark. These are being set up in partnership with patient organizations and public-sector entities. There are currently five technology partners that have joined the ecosystem and more than 1,000 patients who use the digital tools. The current emphasis is on diabetes, inflammatory bowel disease and cancer, and there are plans to expand to other countries and more diseases. The model has received innovation awards from the European Commission and can be seen as catalyst for the digital transformation of healthcare.27 European Health Data Space (EHDS) Challenge Health data in the European Union is fragmented, limiting patient control and research. Inefficiencies and privacy concerns persist due to poor data use. The EHDS28 aims to create a secure and standardized data exchange framework, improving patient care, empowering individuals and driving healthcare innovation for 450 million Europeans. Solution The development of the EHDS requires a collaborative effort among various stakeholders, a strategic approach and technical implementations.Stakeholders involved: –European Commission: Led the EHDS initiative –Member states: Shaped the EHDS through consultations and pilots –Healthcare providers: Offered practical insights –Researchers and innovators: Provided input for secondary data use –Patients and citizens: Engaged via public consultations –Technology providers: Developed infrastructure, services and tools CASE STUDY 3 H20 – Takeda CASE STUDY 4 European Health Data Space (EHDS) Better Together: Building a Global Health Network Economy through Data Collaboration 21

Better Together 2025