"There is an urgent need for frameworks that prioritize fairness and inclusivity in the digital age. Data solidarity offers such a framework, aiming to achieve a more equitable distribution of benefits and risks in digital practices. Key to this approach is the concept of public value: the societal ... benefits that responsible data use can create while minimizing harm. A solidarity-based approach to data governance aims to maximize the public value emerging from the use of data and emphasizes fairness, transparency and accountability in digital practices. Translating these principles into action requires practical guidance. This guide serves as a tool for policymakers, businesses and civil society organizations, equipping them with strategies to implement data solidarity principles in their work. It provides actionable recommendations at all levels, introduces PLUTO (Public VaLUe Assessment TOol) as a structured method for evaluating the public value of data use and explores Harm Mitigation Bodies (HMBs) as a novel echanism for addressing data-related harms. The structure of the guide is as follows: it begins by introducing data solidarity and the concept of public value (Section 1) before offering a step-by-step framework for putting these ideas into practice (Section 2), with tailored strategies for local policymakers, national governments, businesses and non-profits. It also discusses Harm Mitigation Bodies (HMBs) and benefit-sharing agreements (BSAs) as policy instruments to promote data solidarity by reducing harm and ensuring the benefits of data use are widely felt." (Executive summary, pages 3-4) more

"This glossary seeks to clarify key concepts relevant to data solidarity and explain data solidarity’s relationship to other key concepts and instruments in the domain of data governance and data ethics. It complements previous publications on this topic and in particular, the White Paper on Data ... Solidarity. Throughout, the glossary aims to indicate why data solidarity must become integral to data use in the health ecosystem. The first section of the glossary starts with a clarification of key terms that are central to the data solidarity approach. Section two then moves on to discuss key approaches to data governance. Section three introduces concepts that are related to data solidarity, either because of related practices or in that they may be confused with data solidarity. Our discussion of related concepts focuses both on a basic definition of these concepts and on clarifying their relation to data solidarity. Section four takes on ethical challenges and refers to important approaches that analyse the new dimensions of power and inequality that have emerged with digital transformations. Section five underlines key issues that can help move us forward and ends with a strong plea for a new concept of digital health citizenship." (About the glossary, page 4) more