IHI’s new playbook enhances data sharing in health research

The Innovative Health Initiative (IHI)‘s Data Sharing Playbook streamlines collaborative health research by integrating data sharing into project planning, addressing complexities, and promoting early stakeholder engagement. 

IHI has released the Data Sharing Playbook, which aims to accelerate data sharing by integrating it into the core of the planning stage. Developed in collaboration with the European Federation of Pharmaceutical Industries and Associations (EFPIA), the Playbook distils the collective experience of researchers involved in pre-competitive projects to streamline the data sharing process. 

Modern healthcare challenges often require collaborative efforts due to their complexity. This recognition led to the establishment of the Innovative Medicines Initiative (IMI) in 2008 and its successor, the IHI, in 2021. These initiatives promote public–private partnerships to improve patient care and address barriers to medical progress. 

Since 2008, health data has become increasingly important, with collaborative efforts focusing more on data sharing. The upcoming European Health Data Space further emphasizes the significance of patient data in advancing health care. These developments highlight the growing recognition of data’s role in driving medical innovation and improving health outcomes. 

The Playbook serves as a comprehensive and user-friendly tool for all stakeholders in IMI/IHI projects. It provides researchers with a detailed and practical guide to facilitate immediate and effective collaboration, thereby eliminating the need to start from nothing with each new project. It addresses the complexities of data sharing, including internal procedures, regulatory mandates, and technical processes. 

A critical message of the Playbook is to initiate data sharing discussions early. This involves defining data sharing strategies from the outset and developing a Data Management Plan as soon as possible. During the project proposal phase, participants can identify necessary data types and decide on a data sharing model – whether centralized, federated or hybrid – and select appropriate anonymization strategies. Early engagement with internal stakeholders, including academic leads, legal advisors, and data protection officers, can pre-empt potential issues and streamline the process. 

Despite the recognized benefits, sharing health data presents several challenges, including legal, technical, data protection, ethical, and intellectual property concerns. However, substantial data volumes are shared by public and industry partners in IMI/IHI projects, demonstrating that collaboration is feasible while maintaining responsibilities. Notable examples include eTRANSAFE’s ToxHub platform and the HARMONY Big Data Platform, which integrate and harmonize data from various sources to advance scientific research. 

According to a recent LinkedIn post from Niklas Blomberg,  

“Almost every project that we fund at IHI makes use of artificial intelligence and advanced analytics for health outcomes… For Europe to stay competitive in AI and data we must ensure that these datasets can be used to drive European innovation and make a difference to patients and healthcare systems.” 

To support the use of the Playbook, IHI will host an online masterclass workshop on September 4, 2024. This workshop aims to help participants unlock the value of data more swiftly, ultimately addressing the health questions that patients, health systems, and society seek answers to.  

Organizing data access in broad, collaborative projects is challenging and demands significant resources, planning, and expertise. The Data Sharing Playbook provides solid, actionable recommendations to help navigate these complexities. By utilizing the Playbook, research collaborations can streamline data sharing processes, drive innovation, and enhance healthcare outcomes across Europe.